THOUGHT FOR THE DAY
< BACK TO BLOG

Philanthropy in Phocus

Friday, September 3, 2021
3
Sep
Facebook Live Video from 2021/09/03 - Importance of Newborn Screening with ALD Alliance

 
Facebook Live Video from 2021/09/03 - Importance of Newborn Screening with ALD Alliance

 

2021/09/03 - Importance of Newborn Screening with ALD Alliance

[NEW EPISODE] Importance of Newborn Screening with ALD Alliance

The ALD Alliance helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease. This fight begins by making sure every baby born in the United States is tested at birth for ALD. The ALD Alliance was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy.

After losing her son, Aidan to ALD in 2012 at the age of 7, Elisa Seeger started this foundation in his honor with the primary goal of having ALD Newborn Screening passed in every state. New York became the first state to start screening for ALD with the addition of “Aidan’s Law” in 2013.

Since then, Elisa has worked to help other states add ALD by traveling across the country to speak at newborn screening committee meetings. Elisa had federal bills introduced in 2016 which would mandate newborn screening for ALD nationally. This is still a work in progress and as of 2020 has changed this directive to include all diseases added to the federal recommended uniform screening panel.

Tune in for this sensible conversation at TalkRadio.nyc or watch the Facebook Livestream by Clicking Here.


Show Notes

Segment 1

The interview begins with Elsa telling the story of the ALD alliance: she tells the story of her son, Aidan, who was diagnosed with ALD and ultimately succumbed to the disease. Throughout her story, Elisa describes the symptoms and treatment of the disease. She learned that when ALD is screened for at birth, it is much more treatable and the chances of a child’s survival are higher. She also discovered newborn ALD screening options were available in hospital labs, but rarely used in many states. At this point, Elsa realized it was her mission to raise awareness about early diagnosis and screening for ALD.

Segment 2

This segment describes Elisa’s journey with having Aidan’s law which includes ALD in newborn screening. She highlights that each state has its own newborn screening panel, but there is a disparity across states for what testing each panel includes. In the latter part of 2012, Elisa moved to have a bill passed into law which would include ALD screening as a part of the newborn screening panel in New York State. On March 29 of 2013, exactly 11 months after Aidan’s passing, Aidan’s law was passed in New York State which ensured that each newborn was screened for ALD.

Segment 3

After Aidan’s law was signed into effect, Elisa realized her work wasn’t done. In many other states of the U.S., ALD screening was not a part of the newborn screening panel. She highlights that many states were reluctant to engage her at first, because she was not a constituent of that state. However, she managed to find other families in different states who were willing to share their story about how their children were impacted by ALD. At the moment, 23 states include ALD as a part of their newborn screening panel.

Elisa then begins to discuss how, at a federal level, diseases are recommended to be added to newborn screening panels: the federal government reviews conditions and adds them to a panel of recommended diseases to be screened for. As of 2016, ALD has been on this list of recommended diseases to screen for, but it is up to each state’s discretion to screen for each recommended disease.

Segment 4

Elisa discusses her efforts to have ALD screening mandated at a federal level, however, it has not been an easy journey. She is working towards having the federal government allocate funding towards testing for newborn screening; this is because many individual states do not have funding to ensure that this screening happens. She also highlights that this is not specific or exclusive to ALD, but that this also occurs with other diseases which the federal government has  recommended for newborn screening and testing. 

Finally, Elisa shares some details about Aidan’s ride which is a fundraising effort that will take place in West Virginia on October 9th. More details can be found on aldalliance.org.


Transcript

00:05:18.420 --> 00:05:24.030 Tommy D: Good morning, good afternoon good night I don't know when you're gonna listen, this is Tommy D and show his philanthropy and focus.

00:05:25.260 --> 00:05:33.540 Tommy D: I you know I come up here to the attic every Friday morning Friday is actually my favorite day of the week, and not just because the weekend is coming up, and I was actually born on a Friday.

00:05:33.900 --> 00:05:41.100 Tommy D: A whole bunch of years ago, but I was born on a Friday I like Fridays, I feel excited and when I was able to lock in me 10am.

00:05:41.400 --> 00:05:49.740 Tommy D: slot on Friday morning 10am Eastern time here on top rated that nyc was really blessing really great way to start my Friday morning and and.

00:05:50.550 --> 00:05:57.570 Tommy D: i'm thrilled that every single week I have this opportunity in this honor to speak to leaders of nonprofit organizations.

00:05:58.050 --> 00:06:12.000 Tommy D: You might say, if you haven't been listening, for the last 30 some odd weeks, why Tommy do you want water what's that all about well here's the thing I believe that nonprofits change our world every second of every minute our day, the whole thing.

00:06:13.050 --> 00:06:18.150 Tommy D: And unfortunately well, in my opinion, they are unfortunately overlooked.

00:06:18.690 --> 00:06:28.530 Tommy D: Many of us in the sector, know underfunded at times and unrecognized for the work that they do all these seconds of minutes of hours and days, weeks, months so.

00:06:29.130 --> 00:06:39.360 Tommy D: My answer to that is this program philanthropy and focus, we have one mission here so we're not a nonprofit but my mission is to amplify the message for nonprofits help them tell their stories.

00:06:39.630 --> 00:06:43.170 Tommy D: Give them a platform, give them an opportunity to come on the Program.

00:06:43.680 --> 00:06:50.340 Tommy D: meet me where I am you know where I am i'm teasing it but i'm going to tell you where I am from the top of my house just below the roof.

00:06:50.760 --> 00:06:55.950 Tommy D: i'm in the attic that's right i'm in my attic above the second floor it's quiet up here and.

00:06:56.670 --> 00:07:01.890 Tommy D: Well, right now, it's quiet there's no kids around, so I have here by myself in the attic.

00:07:02.310 --> 00:07:09.600 Tommy D: And every week I bring a guest on and every week it's a leader of a nonprofit organization to amplify, as I say, amplify their message tell their story.

00:07:10.560 --> 00:07:17.640 Tommy D: These organizations are changing the world, and you know if you know me, you know I call myself the nonprofit sector connector.

00:07:18.510 --> 00:07:26.730 Tommy D: So I sit on the committee for the New York City manager towards the long island imagine or shout out to my guests last weekend so reading can appreciate you guys being on the show.

00:07:27.420 --> 00:07:35.700 Tommy D: We had such great conversation about partnerships and alliances between nonprofits and for profits, if you haven't checked out that episode, please do talking alternative broadcasting.

00:07:36.180 --> 00:07:44.610 Tommy D: on Facebook or right here top rated that nyc same place your funding is now so so Ken founded the manager towards the this year in.

00:07:45.090 --> 00:07:53.040 Tommy D: April of 2022 will be the 10th anniversary of the long island match awards and I bring it up now because it's relevant to my guest today.

00:07:53.820 --> 00:08:03.720 Tommy D: Because I was making some phone calls when the applications we're going live for the New York City and managing awards and that's how it leads to see her and I met, I just have a list and.

00:08:04.080 --> 00:08:09.690 Tommy D: The al di alliance starts with an A so Alphabetically was one of my first calls and.

00:08:10.320 --> 00:08:23.310 Tommy D: Elisa and I had had a quick conversation i'm a stranger to her that point, I said you don't know me i'm involved with the imagine awards it's all it's for organizations, based in the five boroughs in New York City this this version New York City manager towards his gang.

00:08:24.360 --> 00:08:30.450 Tommy D: And I said, I think you should apply and now Lisa organizations, one of the finalists in in the imagine awards and that.

00:08:30.990 --> 00:08:37.500 Tommy D: That event comes up in October, so I don't usually do the whole commercial up front here, but I thought it was relevant when when we start so.

00:08:38.400 --> 00:08:47.070 Tommy D: Listen, what I asked you all to do is go back and see the other interviews that i'm doing look for organizations that are relevant to you causes that are important to you.

00:08:47.310 --> 00:08:56.370 Tommy D: reach out to me if you have questions I just literally as are starting to show somebody texted me I don't know who it is it's a 631 numbers that I want to do something for the American cancer society can you help me out.

00:08:56.700 --> 00:09:04.650 Tommy D: So, like I got it yeah 1059 11 o'clock i'll figure out who that wasn't not to put you out there folks but I will figure out who you are and i'll hook you up with that.

00:09:05.100 --> 00:09:09.180 Tommy D: i'm the nonprofit sector connector it's what i'm about it's really what i'm passionate about.

00:09:09.900 --> 00:09:18.210 Tommy D: So that's like sort of meet at that that crossroads of where nonprofits and for profits connects what I say so let's move on and let's get into the conversation here, I have.

00:09:18.810 --> 00:09:27.150 Tommy D: An honor and incredible opportunity to have at least to see her tell her story tell her story about the organization so i'm going to read a bit real quick so.

00:09:27.720 --> 00:09:34.200 Tommy D: Lisa fights to make sure other boys and their families across the nation, have the knowledge and resources they need to fight Al di.

00:09:34.920 --> 00:09:43.470 Tommy D: Immediately after her beautiful son aiden passed away She fought to get newborn screening for al di i'll tell you what he is in second for ld.

00:09:43.890 --> 00:09:50.430 Tommy D: In New York state past and since then she continues to add other states that growing list of hope, known for her compassion and strength.

00:09:50.790 --> 00:10:01.410 Tommy D: she's the founder of the aiden jack secret Foundation, which is now called the ld alliance and we'll talk about that in a second adrenal Lupo dystrophy did I get it yes.

00:10:01.680 --> 00:10:09.390 Tommy D: I did alright cool alright, I was practicing I was like staring in the mirror before and I and the last 10 seconds was like don't screw it up today don't screw up.

00:10:10.680 --> 00:10:13.710 Tommy D: Well, first let's jump let's just jump right into the conversation Lisa.

00:10:14.070 --> 00:10:19.170 Tommy D: Thank you for for agreeing to do this, a lot of organizations nonprofits are founded.

00:10:20.190 --> 00:10:23.610 Tommy D: Out of something tragic and challenging that happens to a family and.

00:10:25.200 --> 00:10:27.120 Tommy D: I think i'm incredibly.

00:10:28.680 --> 00:10:35.910 Tommy D: I think we're blessed that society when somebody finds through tragedy, the opportunity to create change and.

00:10:36.510 --> 00:10:43.980 Tommy D: I would just like to start with saying thank you for being here, we can bring up more information about the organization throughout the show, but I really just want you to share with.

00:10:44.430 --> 00:10:49.800 Tommy D: With my audience the folks that are checking in tell me the story about this organization, if you could please.

00:10:50.790 --> 00:10:59.220 Elisa Seeger: Absolutely, I wanted to say thank you for having me on and and allowing me to share my story, because the more people that know about this.

00:11:00.300 --> 00:11:04.020 Elisa Seeger: You know, the more we can make progress to make this happen.

00:11:05.280 --> 00:11:10.230 Elisa Seeger: So my son aiden was born in 2004 he was perfectly healthy.

00:11:11.550 --> 00:11:21.360 Elisa Seeger: We had no reason to believe anything was wrong with him, he was walking at 10 months, he met all his milestones he did really well in school, he played sports.

00:11:22.800 --> 00:11:33.120 Elisa Seeger: In the latter part of first grade he started having some vision problems and we didn't think it was a big deal at the time we just said Okay, he needs glasses.

00:11:33.660 --> 00:11:50.880 Elisa Seeger: will go to the eye doctor, so we took him to the ophthalmologist who said I don't think anything is wrong with him, we took him to a pediatric ophthalmologist who said the same thing, maybe should go to a retina specialist so we did that.

00:11:52.530 --> 00:11:58.140 Elisa Seeger: We really didn't get anywhere, we went back to the pediatrician who then recommended a neurologist.

00:11:58.860 --> 00:12:10.440 Elisa Seeger: And even on the physical checkup with this neurologist he didn't believe anything was wrong, but he said let's do an MRI just to make sure, nothing else is going on.

00:12:11.160 --> 00:12:28.500 Elisa Seeger: And that was June of 2011 and basically he was six and a half years old, and that is the first time we heard about Al di or adrenal good dystrophy so when his MRI results came back.

00:12:30.930 --> 00:12:42.930 Elisa Seeger: He already had a lot of damage because of the ld So what is Al di ld is an excellent inherited metabolic disease, which means that.

00:12:45.240 --> 00:12:59.310 Elisa Seeger: It most severely affects boys and men, where women are carriers, so I happen to be a carrier of this disease and pass it on obviously I did not know that I was a carrier of this disease and.

00:13:00.360 --> 00:13:06.870 Elisa Seeger: With the eld it's not something that needs immediate attention at birth, but it's something that.

00:13:08.250 --> 00:13:15.180 Elisa Seeger: is usually triggered the cerebral version of this disease is triggered between the ages of four and 10.

00:13:16.560 --> 00:13:32.940 Elisa Seeger: And what it does, is that it affects all neurological functioning, so the ability to see to hear to walk to talk to eat is all taken away until you're in a vegetative state and ultimately death.

00:13:35.940 --> 00:13:41.970 Elisa Seeger: So when my son was diagnosed to we embarked on this mission to save his life.

00:13:43.230 --> 00:13:54.390 Elisa Seeger: We went to university of Minnesota and then Duke he was eligible for bone marrow transplant, which is still the method of treatment for this disease.

00:13:55.590 --> 00:14:02.430 Elisa Seeger: So we moved our family down to North Carolina and aiden did have a bone marrow transplant at Duke.

00:14:03.630 --> 00:14:20.040 Elisa Seeger: But unfortunately, because he was a late diagnosis, he did not do well, so we spent seven months in patient there and then three months at nyu and he passed away in April of 2012.

00:14:21.630 --> 00:14:22.140 Elisa Seeger: i'm.

00:14:25.260 --> 00:14:39.540 Elisa Seeger: Sorry um so during that time that living in the hospital and doing research on anything that can possibly save his life, above and beyond the bone marrow transplant that he already had.

00:14:41.130 --> 00:14:54.420 Elisa Seeger: I found out that there was a newborn screening test for this disease, but not one state was putting it to use and if New York and other states were using this.

00:14:54.990 --> 00:15:05.820 Elisa Seeger: That would have mean the difference between life and death, not only for him, that would have saved his life, but that would have saved thousands of other boys throughout the country.

00:15:06.570 --> 00:15:19.740 Elisa Seeger: And I knew at that moment, that this would be my mission, because I felt like this was such an injustice, of course, and I didn't want this to continue to happen when it didn't need to.

00:15:21.780 --> 00:15:32.940 Elisa Seeger: The the thing with Al di which I know the majority of people, probably have never heard of this disease, just as we haven't hadn't at the time.

00:15:34.950 --> 00:15:46.560 Elisa Seeger: i'm going to use cancer as an example, because I think we all know about cancer it's the difference of having a late stage for diagnosis, as opposed to.

00:15:47.730 --> 00:15:50.820 Elisa Seeger: Having the knowledge that maybe you have.

00:15:51.840 --> 00:15:57.180 Elisa Seeger: You know, a family history of cancer or breast cancer and you need to be monitored.

00:15:57.570 --> 00:16:12.660 Tommy D: Why did that drastic it's not it's not even so you're saying the had had the screen when the screening happens the awareness is almost as if this is something to keep an eye on it and correct me from wrong versus you have something here.

00:16:13.110 --> 00:16:16.080 Elisa Seeger: Exactly so that's exactly true so.

00:16:16.590 --> 00:16:26.160 Elisa Seeger: If we would have known at birth, we could have monitored and treated him before the onset of symptoms, because, by the time he was diagnosed.

00:16:27.210 --> 00:16:32.370 Elisa Seeger: The damage was already done, similarly to being a late stage for.

00:16:33.960 --> 00:16:50.310 Elisa Seeger: The damage to his brain it's a deed my eliminating disease and once that damage is done it's it's impossible to change the course of the disease, so that's why it's so important to have an early diagnosis.

00:16:52.050 --> 00:16:53.730 Elisa Seeger: so late, the later part of.

00:16:55.230 --> 00:17:06.750 Elisa Seeger: I started the foundation that was originally called the eight and jack seeger foundation in his honor and I had no idea how to.

00:17:07.920 --> 00:17:17.850 Elisa Seeger: You know, have this condition added to newborn screening, so I just you know kind of started at step one looking into research.

00:17:19.170 --> 00:17:32.310 Elisa Seeger: I remember calling the New York state lab and Albany as I was laying in bed with aiden at nyu and speaking to Michelle who's one of the directors of the lab who is still there and.

00:17:33.420 --> 00:17:48.900 Elisa Seeger: You know, talking to her about Al di and what that would entail to add it and you know i'm so grateful to her and to Joe who also works there at the lab and they're just really amazing people to.

00:17:50.970 --> 00:17:57.300 Elisa Seeger: Wanting to add conditions and wanting to work and and try to save as many babies as possible.

00:17:58.110 --> 00:18:13.650 Tommy D: So we're going to go to a quick break, but I, but even before we do that I, I appreciate your candor Lisa I appreciate how and my condolences and i'm sorry for your loss of your son obviously and.

00:18:15.450 --> 00:18:22.020 Tommy D: You know, being a father again can't imagine so so I appreciate you coming on and having this conversation.

00:18:23.550 --> 00:18:29.670 Tommy D: And I appreciate you calling out people who who who helped you out in this in this crusade initially Michelle and Joe I don't know who you're.

00:18:30.390 --> 00:18:41.220 Tommy D: Sending hugs from my attic because you're changing the world, and now I feel like i'm getting i'm going to get mushy here already, but thank you for being there to help ELISE in this mission and.

00:18:43.860 --> 00:18:49.110 Tommy D: it's how we change the world we change the world together, I think that's what we're supposed to be doing is doing these things and and.

00:18:50.700 --> 00:19:05.940 Tommy D: When we come back, I want to hear about this journey, you know, and I want to hear to lose that how you find the strength to say, this is my mission now, and this is something I need to do and and then how it all happened.

00:19:07.830 --> 00:19:14.970 Tommy D: Very low Tommy D from the attic right now Lisa thanks for being here we'll be back in 90 seconds everybody philanthropy and focus, thank you.

00:21:12.330 --> 00:21:12.660 Now.

00:21:24.210 --> 00:21:33.870 Tommy D: If I ever get out of the attic have to get a new theme song for the show, but for now every Friday morning come through the attic join me don't don't come through the attic time has.

00:21:35.100 --> 00:21:41.700 Tommy D: come through the static join me in the attic where we tell stories about nonprofit organizations, helping them amplify their message.

00:21:42.600 --> 00:21:52.620 Tommy D: Lisa secrets here, I did something different there during the break so if you're watching on Facebook actually show the website, which was a trick we tried to show some pictures during our the show pals this week.

00:21:54.540 --> 00:22:08.640 Tommy D: we're back we're live at least two seniors here founder Executive Director of the Al di alliance and we're just talking about Al di and and the journey that alisa has made over the last nine years.

00:22:09.270 --> 00:22:21.900 Tommy D: And we started off talking about this disease and and had the disease when they did CS is identified early on, there could be treatment procedures that are put in place to to help somebody with.

00:22:22.980 --> 00:22:30.930 Tommy D: With this disease, so at least we were talking you called New York state the New York state lab you talk to Michelle you're talking to Joe.

00:22:31.380 --> 00:22:43.140 Tommy D: Tell me, I and use the word in justice in the first segment i'm with you on that, but that's why there's catalyst in this world, people like yourself who who create change who make change.

00:22:44.250 --> 00:22:55.560 Tommy D: Did you get resistance, when you call the state and your and your questions are like, why is this not, why are we not doing this like, why is this not part of you know newborn screenings tell tell us about that story what is that experience like.

00:22:55.590 --> 00:23:14.340 Elisa Seeger: I know that was my first step, because, as I mentioned, I had no idea what to do, I just knew that I wanted to do something to ensure that every baby was tested for this disease at the right time, so calling Michelle was great and she's amazing.

00:23:15.390 --> 00:23:29.220 Elisa Seeger: She is one of the lab directors there in New York, and you know she just gave me a lot of information, but unfortunately their hands are tied so of course they want to do as much as they can.

00:23:29.580 --> 00:23:41.820 Elisa Seeger: But until they are told to by the state, they can't do it, so let me just backtrack a little bit because I had no idea what newborn screening was, as I think the majority of the population doesn't.

00:23:41.850 --> 00:23:56.070 Tommy D: Does this is it the heel perk is that what it is a great alright so again only only knowing we'd have this conversation did I think about this and talk to my wife about it because I didn't really know what it was to be honest with you so let's most people probably don't yes.

00:23:56.220 --> 00:24:04.920 Elisa Seeger: So I mean i've had two children and I knew that they took drops of blood from both of my baby's heels before they left the hospital.

00:24:05.280 --> 00:24:10.950 Elisa Seeger: But no one ever told me what those drops of blood were being used for so.

00:24:11.460 --> 00:24:21.510 Elisa Seeger: Again, they take a few drops of blood they go on a blood spot card so that blood spot card has about five circles that they put the blood on.

00:24:21.990 --> 00:24:36.360 Elisa Seeger: That blood spot card goes to your state's lab laboratory and depending on the State you live in is how many conditions that blood spot card is tested for.

00:24:36.810 --> 00:24:56.010 Elisa Seeger: So I just want to say that this is not anything additional that the family has to do, or that the baby has to go through, we are already doing this in every state the huge disparity is the number of conditions that are being tested for at the lab level.

00:24:57.240 --> 00:25:01.650 Tommy D: One second when you see the disparity you mean disparity state by state of what you're sensing.

00:25:02.160 --> 00:25:21.870 Elisa Seeger: Okay sorry state by state which I didn't realize until I became more involved in this, because of my son and because I knew that this is the work that I wanted to do so in 2012 I embarked on this mission to have Al di added to our newborn screening panel.

00:25:23.130 --> 00:25:44.100 Elisa Seeger: I didn't know where to start I started, by reaching out to the Commissioner of health, you know I got the standard stock letter back like you know, thank you for your story we're doing what we can you know kind of nonsense um so, then I reached out to my local assembly person and Senator.

00:25:45.750 --> 00:25:54.780 Elisa Seeger: And started that way, so I said oh if we could have a bill introduced, we can have this become legislation, so we would.

00:25:55.200 --> 00:26:05.040 Elisa Seeger: You know, ensure that New York can do this, so the bill language basically had that funding attached to it and a time frame as well.

00:26:05.430 --> 00:26:20.070 Elisa Seeger: Because I wanted to ensure that obviously the lab had the money to move forward, and also that we were in taking 10 years to do this, that we were doing and as quickly as possible so that was the latter part of.

00:26:21.540 --> 00:26:33.570 Elisa Seeger: And it did not become law, I mean I only had about three months at that time, so we started a petition, we started getting signatures on that we were on some local news channels.

00:26:34.710 --> 00:26:46.350 Elisa Seeger: But in New York state if a bill does not become a law by by December, you starting again in January, so January 2013 luckily.

00:26:47.400 --> 00:26:54.600 Elisa Seeger: Because I already had done the work in 2012 we already had a build number in January of 2013.

00:26:54.750 --> 00:27:07.350 Tommy D: When you say you have to go back just to kind of take us through that because you said you've to start applying again getting new letters from assembly folks or is it like What do you do, are you starting from second base are you back in in the batter's box on speech.

00:27:07.620 --> 00:27:18.030 Elisa Seeger: yeah so you're starting from second base because you've already had the conversation with both the Assembly Members with the senators and the state and.

00:27:18.450 --> 00:27:37.470 Elisa Seeger: you've you've raised this issue so they are already aware of it they're already behind it, so that was the good part that January 1 we already had a bill number to get started and working on, so that was a huge help for us.

00:27:38.670 --> 00:27:50.190 Elisa Seeger: So we started January again and luckily, you know with meetings in Albany I think I had 40 meetings in one day.

00:27:50.310 --> 00:27:50.730 Elisa Seeger: That was.

00:27:50.880 --> 00:27:54.870 Elisa Seeger: lit with aiden's grandfather, so we did 20 each.

00:27:54.990 --> 00:27:56.730 Tommy D: That was that the team initially.

00:27:56.850 --> 00:28:02.760 Tommy D: as well, and you because you're saying we and I just want i'm wondering who is the boss of people this way or if was a.

00:28:03.810 --> 00:28:04.560 Tommy D: Car people.

00:28:04.920 --> 00:28:20.790 Elisa Seeger: yeah so as i'm my husband aiden's grandfather, and what we did was you know you know, I understand that legislators are asked to do 100 things every single day, so I wanted to make this issue.

00:28:21.450 --> 00:28:30.240 Elisa Seeger: You know, give them all the information and make it easy for them to go to their boss, and say hey, this is what the problem is, these are the facts.

00:28:31.290 --> 00:28:41.970 Elisa Seeger: let's try to make this happen, so I kind of created these folders with bullet points of what the disease is what it would cost why this is so important.

00:28:42.390 --> 00:28:55.290 Elisa Seeger: And, and the most important piece, I have to say is sharing of not only my story, but other families that have gone through this and that's really what hit it home for them.

00:28:56.610 --> 00:29:04.470 Elisa Seeger: You know, knowing that you have this perfectly healthy child and then all of a sudden, they start regressing and.

00:29:05.880 --> 00:29:17.190 Elisa Seeger: That doesn't need to happen, you know, like if we knew at birth, they could have been monitored and treated before it was too late, before it was too late to stop the disease.

00:29:19.020 --> 00:29:22.290 Elisa Seeger: So in March march 29 actually of.

00:29:24.120 --> 00:29:25.620 Elisa Seeger: aiden's law was signed.

00:29:27.150 --> 00:29:38.250 Elisa Seeger: So aiden's law basically meant that every baby born in New York state would now be tested for al di so that was added to our panel so.

00:29:38.310 --> 00:29:51.900 Tommy D: That, that is, I said I wrote down march 29 2013 so that not that felt fast, but that seems like once you got back on there in January 13 you were able to get this thing done.

00:29:52.680 --> 00:30:10.530 Elisa Seeger: Yes, and and I believe so, I made a promise to my son that I would do this um so he passed April 29 of 2012 and it was exactly 11 months to the day, as well as Good Friday.

00:30:10.590 --> 00:30:11.310 And i'm counting.

00:30:13.320 --> 00:30:13.680 Elisa Seeger: well.

00:30:13.800 --> 00:30:15.390 Elisa Seeger: I feel like.

00:30:16.470 --> 00:30:30.330 Elisa Seeger: Not to get into religion or anything else, but I just feel like he really helped move this along you know I had I had promised this him this and 11 months to the day it it happened.

00:30:31.800 --> 00:30:42.390 Tommy D: I don't I feel awkward saying congratulations, but but that's the seems like the word that's that fits you got this done in his honor and how many lives now.

00:30:43.470 --> 00:30:53.010 Tommy D: have been changed as a result of of what you've done here, and what you did in again I i've been up to Albany for numbers of different reasons and.

00:30:54.240 --> 00:31:04.590 Tommy D: I feel like this is quicker than some of the things i've seen in my experiences being up there, you know not advocating not personally advocating anything specific but i've been up there with with different reasons and.

00:31:05.460 --> 00:31:08.550 Tommy D: It seems rather quick, although maybe it didn't seem quick while you were in it.

00:31:10.050 --> 00:31:12.360 Elisa Seeger: It definitely was pretty quick.

00:31:13.980 --> 00:31:20.370 Elisa Seeger: You know, when I talked to other people who say usually list legislation takes years for it to happen.

00:31:21.930 --> 00:31:41.640 Elisa Seeger: So you know I i'm so grateful that it was quick and that New York actually started testing at the end of 2013 because they needed to have some time, of course, to you know to validate the test and to add it to their systems, so we did start testing at the end of.

00:31:43.620 --> 00:31:47.190 Elisa Seeger: And that's just been amazing.

00:31:48.720 --> 00:32:02.100 Elisa Seeger: I never thought that I would be able to even meet one of the families that were picked up because of aiden's law, and you know when I did and Matthew this his name, he was the fourth baby picked up and.

00:32:02.130 --> 00:32:04.410 Tommy D: When you said picked up just tell us what that means.

00:32:04.650 --> 00:32:09.540 Elisa Seeger: So diagnosed because of aiden's law so diagnosed at birth.

00:32:10.920 --> 00:32:12.000 Tommy D: Which we've said again.

00:32:13.050 --> 00:32:23.250 Tommy D: If you didn't listen to first segment when this is picked up at birth it's a game changer right now it's now it's let's be preventative there's a lot of things we can do we have some we have opportunity correct.

00:32:25.590 --> 00:32:26.940 Elisa Seeger: So I.

00:32:28.170 --> 00:32:39.480 Elisa Seeger: got to hold Matthew and meet his family, and that was just such an emotional amazing gift to know that his life would be different.

00:32:41.520 --> 00:32:44.730 Elisa Seeger: Because of megan's law, you know because of that so.

00:32:45.240 --> 00:32:50.850 Tommy D: Incredible it's got to be incredibly special and I want to hear more about those connections to these families, because.

00:32:51.480 --> 00:33:02.040 Tommy D: You in aiden's legacy are changing and saving lives of other people, and I am thankful, and so many people are thankful for that, but I know you didn't stop in New York state.

00:33:02.580 --> 00:33:08.970 Tommy D: So let's leave let's tease them let's bring them back we'll be back in 90 seconds, because we got New York state down in 2013, but a lot of work to go.

00:33:09.570 --> 00:33:18.420 Tommy D: we're in the attic philanthropy and focus ELISE is eager founder and aiden's mom of the ld alliance i'm going to say it again adrenal Lupo dystrophy.

00:33:18.960 --> 00:33:26.820 Tommy D: And when when it is screen for at birth, this is a completely different situation we're in talk more about it, we come back i'll see you guys in 90 seconds.

00:36:01.200 --> 00:36:09.660 Tommy D: i'd like you to do that at like static join me in the attic Friday mornings and anywhere you listen to your podcast and can hear us after the show.

00:36:10.140 --> 00:36:24.060 Tommy D: we're here talk radio dot nyc and on Facebook talking alternative broadcasting Lisa senior founder of the Al the alliance finalist in the New York City imagine awards rising star category, so I was just.

00:36:24.540 --> 00:36:35.280 Tommy D: going to put your website up again during the break and I see you have the imagine awards logo like right on your site love, so your social media team certainly work in that, and the Web team is doing that so congratulations on.

00:36:35.700 --> 00:36:45.120 Tommy D: On that, so let me bring you back folks if you're just checking into the show if you're running late and you just getting here now so Elisa founded this organization in memory of her son aiden.

00:36:45.960 --> 00:37:02.880 Tommy D: who unfortunately passed away of ld adrenoleukodystrophy in 2012 and eight in law, what was was signed in in Albany New York state which now has included ld in newborn screening that's changing the lives of.

00:37:03.690 --> 00:37:16.590 Tommy D: young boys who end up having this is disease, so we we leave Albany probably pretty jazzed right about everything that's gone on, and what you have in place but.

00:37:16.980 --> 00:37:28.500 Tommy D: I get the impression that that I know for a fact it wasn't enough, because I know some of the story, but I get the impression that you maybe you celebrated for a bit and said there's more work to be done is that is that about right.

00:37:30.120 --> 00:37:31.200 Elisa Seeger: that's exactly right.

00:37:32.220 --> 00:37:37.050 Elisa Seeger: So again, going back to the newborn screening, I was thinking about this.

00:37:38.550 --> 00:37:53.100 Elisa Seeger: And after aiden's law was signed, I said to myself well, what about the 49 other states, you know I it just didn't sit well with me that you know friends all over the country.

00:37:54.210 --> 00:37:59.940 Elisa Seeger: wouldn't have the same chance because their states we're not testing for this condition.

00:38:01.890 --> 00:38:12.810 Elisa Seeger: it's just completely not acceptable right, so I started looking more into what I could do to change that and I started.

00:38:13.530 --> 00:38:23.820 Elisa Seeger: by looking at what states were having newborn screening committee meetings, so a lot of states do have a committee that meets.

00:38:24.150 --> 00:38:35.850 Elisa Seeger: Once twice sometimes three times a year to discuss if they're adding any additional conditions to their panel, so it started speaking at different states and.

00:38:36.270 --> 00:38:54.720 Elisa Seeger: You know, as as one person and a tiny organization I just tried to focus on states that maybe had an advocate so had a family that was affected by this condition or was a larger state that I knew that it would help you know.

00:38:55.800 --> 00:38:56.580 Tommy D: Most people.

00:38:56.640 --> 00:38:57.960 Elisa Seeger: Yes, the most people.

00:38:57.960 --> 00:39:11.280 Tommy D: So able to find when you got into these States I think again i'm I love that the story of somebody you know i'll be against the odds and going after this and thinking big i'm all about it.

00:39:12.270 --> 00:39:18.840 Tommy D: My question to you, though, is, you have to really make some alliances part of your name but make some alliances in the States, because.

00:39:19.590 --> 00:39:26.340 Tommy D: I know this there's only so much we can do we only have 24 we got 24 hours right, we can use them effectively, but at the same time.

00:39:26.850 --> 00:39:36.990 Tommy D: There is not a 25th so what until the next day, I guess, but how do you talk about that strategically how you've made connections on the ground, you know across the country because.

00:39:37.500 --> 00:39:51.150 Elisa Seeger: Now exactly it's exactly what you said, because a lot of the newborn screening labs when I called them to say hey, I would like to come to your state and talk to you about this condition and hopefully have you added to your panel.

00:39:52.290 --> 00:40:05.220 Elisa Seeger: A lot of the States were not as open to it, and what I mean by that is like they'd say, well, you live in New York, why are you coming to Texas, why are you coming to Florida, why are you coming to Tennessee.

00:40:06.810 --> 00:40:25.170 Elisa Seeger: And I had to explain to them, because I believe that your baby should be saved as well, I don't think a baby born in New York is more important than a baby born anywhere else across the country I feel like this should be universal so realizing that this is a broken system.

00:40:27.000 --> 00:40:34.500 Elisa Seeger: The other strategy was finding an advocate in those states and having them come with me to those meetings.

00:40:34.890 --> 00:40:53.940 Elisa Seeger: Because, of course, that was helpful if I can say to the committee hey I have this person this family that has been affected by this disease that has lost their son or their son is permanently disabled because of this condition they want to come and tell their story.

00:40:54.210 --> 00:40:59.190 Tommy D: And their your constituent there in yes, and she there in South Florida wherever.

00:40:59.580 --> 00:41:16.830 Elisa Seeger: Exactly they're your constituent and then i'm more focused what I was talking about on facts, so this is, you know how many children will be diagnosed with the disease, this is the cost, which is very minimal you know I try to talk.

00:41:16.860 --> 00:41:20.340 Tommy D: More about the cost the cost of implementing it.

00:41:21.180 --> 00:41:23.040 Tommy D: be part of the screen yes.

00:41:23.130 --> 00:41:37.680 Elisa Seeger: Exactly so as an example and every state does differ with this, but as an example, my son's medical bills, he was impatient for 10 months were over $4 million.

00:41:38.370 --> 00:41:48.120 Elisa Seeger: For over $4 million for one child that was diagnosed late and needed to be in the hospital for that length of time.

00:41:48.630 --> 00:42:09.000 Elisa Seeger: So New York state is actually the third largest in the country, we have 250,000 babies born, each year, and what it costs us to add this condition to the State panel was about half a million dollars so just think about that $2 and 50 cents.

00:42:10.320 --> 00:42:17.130 Elisa Seeger: pretty much is what it cost to add this condition to ensure that every baby was tested for.

00:42:17.130 --> 00:42:29.670 Tommy D: This you, you would think and it will, are you would think the carriers, the insurance carriers, we would be behind you, for this is that is that either somewhere, you want to go or have you aligned with them.

00:42:30.120 --> 00:42:46.470 Elisa Seeger: I would love to go in that direction, because, as I tell more of the story i'm getting a lot of pushback on what i'm doing so, you know any allies on this would be amazed would be really amazing so.

00:42:47.880 --> 00:42:53.670 Elisa Seeger: You know i've spoken in probably about 15 states, you know, obviously, that was put on hold with Kobe did.

00:42:54.960 --> 00:43:07.980 Elisa Seeger: But you know Texas California Connecticut Tennessee iowa so again, right now, thankfully, we are a 23 states that are testing for this condition.

00:43:08.400 --> 00:43:20.580 Elisa Seeger: So there are 4 million babies born every year in the United States, and we are probably at 2.5 million babies that are now being tested for this condition which is amazing.

00:43:21.570 --> 00:43:24.450 Tommy D: But, but let me just stop you because before.

00:43:25.830 --> 00:43:37.290 Tommy D: march 29 of 2013 zero babies are being tested Is that correct, so you so Lisa you've made an incredible impact i'm not saying you stop.

00:43:37.740 --> 00:43:42.750 Tommy D: i'm with you let's go, how can we want to know how my people that people i'm connected to can help we'll talk about that shortly.

00:43:43.200 --> 00:43:51.990 Tommy D: But you you're changing the world you literally are changing the world and not shout out again on the rising star award finalist situation which that event is.

00:43:52.830 --> 00:44:00.540 Tommy D: it's coming up everybody's October 19 make sure I get the date right the 19th in Ob New York City and it's in ballroom tickets are available.

00:44:01.110 --> 00:44:11.430 Tommy D: Go to nyc imagine awards COM or reach out to me Tommy at philanthropy focus calm wasn't gonna make a commercial there, but I felt like it was appropriate, because that is an incredible night.

00:44:12.750 --> 00:44:22.680 Tommy D: you're making you're changing the world you're making an impact I talk about two things, every day, impacting value how am I evaluate how am I, making an impact, and I think this show does some of that.

00:44:23.040 --> 00:44:32.760 Tommy D: But it's people like you on the front lines that are doing it there's work to be done, but you're you're you got it this I hope there's times when you realize, and you can sit back and go.

00:44:33.480 --> 00:44:38.160 Tommy D: I am changing the world i'm making things better for babies and their families, do you have that time.

00:44:40.170 --> 00:44:54.600 Elisa Seeger: um I do think about that and i'm grateful for all of the families that have been diagnosed to debt, you know up to today because I know that their lives will be different and i'm grateful for that, but I do.

00:44:55.650 --> 00:45:08.040 Elisa Seeger: lay awake at night thinking about those families, like myself, that won't know until it's too late that think they have a perfectly healthy child that have no reason to believe.

00:45:08.580 --> 00:45:11.640 Tommy D: Anything is wrong because there's no signs until it's too late.

00:45:12.270 --> 00:45:13.290 Elisa Seeger: there's no science.

00:45:14.610 --> 00:45:25.050 Elisa Seeger: Until they start losing their vision until they can't focus until maybe they're walking or you know something is disrupted neurologically.

00:45:25.560 --> 00:45:33.570 Elisa Seeger: But by that time, the damage is already done so, this is what I think about you know, this is what breaks my heart because.

00:45:34.470 --> 00:45:53.190 Elisa Seeger: Again, this is not something that goes away my son passed in 2012 my heart is broken my heart, will always be broken it's not a day that goes by that I don't think about him and how he would be right now and what he would be doing so.

00:45:54.900 --> 00:45:57.090 Elisa Seeger: I just want that to stop happening.

00:45:57.960 --> 00:46:06.120 Tommy D: So I get it, so you have to be relentless in this, but I, I will all clap for you, because you are too busy working on that, so thank you.

00:46:06.870 --> 00:46:20.220 Tommy D: So let's let's keep it moving and 27 more states to go if my math is is right on and that's a million and a half babies a year I forget if i'm doing the math right, I mean I gotta say this on a personal level, I have two boys and I have two daughters as well, but.

00:46:21.810 --> 00:46:34.380 Tommy D: One of my boys was born before aiden's law and he's 10 and I need to figure out if we don't have to talk about it now, but I can I get him tested for this at this point is like because i'm because i'm kind of concerned now.

00:46:36.180 --> 00:46:43.710 Tommy D: yeah so we have to talk well I gotta figure that out So how do we get after these these 27 other states what's the what's the.

00:46:44.130 --> 00:46:51.570 Tommy D: You know who you need who do you and we were going to break in a SEC here, but who who do you need you can you can start we'll do a start and stop and come back, but.

00:46:53.100 --> 00:47:03.240 Tommy D: How does that what does that look like to attack it and not attack, but let's that's that sounds mean align with these other states advocates advocates in the States.

00:47:03.750 --> 00:47:06.030 Elisa Seeger: Sure, I mean should I start now I do.

00:47:06.270 --> 00:47:11.100 Tommy D: yeah let's start like let's start a little bit like what what's your vision is to me big vision, then we'll take a break come.

00:47:11.100 --> 00:47:32.160 Elisa Seeger: Back okay so um I started thinking about this nationally right, I said this process is ridiculous to have to go through 50 States individually to make this happen, so there is a federal committee it's called the federal recommended uniform screening panel.

00:47:33.240 --> 00:47:41.640 Elisa Seeger: And there is a committee that reviews conditions and decides whether they should be added to this panel so in.

00:47:43.290 --> 00:47:49.890 Elisa Seeger: Thankfully, Al di was added to this panel which makes it easier for States to adopt it.

00:47:51.270 --> 00:47:53.520 Tommy D: And then, so can the government mandate.

00:47:53.970 --> 00:47:54.330 Elisa Seeger: Maybe.

00:47:54.720 --> 00:47:58.740 Tommy D: If it's on the list, so the state's decision thing like after that.

00:47:59.010 --> 00:48:02.160 Elisa Seeger: So that's the problem and that's what i'm trying to fix.

00:48:03.390 --> 00:48:23.550 Elisa Seeger: So the federal government reviews conditions that have been nominated and add them to a panel, but it's called recommended, so it cannot mandate, the States to do it, it can say we, as the federal government recommend that you test for these 35 conditions that we have approved.

00:48:24.780 --> 00:48:36.360 Elisa Seeger: And states can add conditions, without being on this panel which New York did do but it's you know, again, I feel like we should have the support of the Federal Government.

00:48:36.690 --> 00:48:41.010 Tommy D: or yells he is on this list right now in as of 16 did you say right.

00:48:41.460 --> 00:48:51.300 Elisa Seeger: As of 2016 because the data that we had from New York state and from aiden's law is what helped it move on to that panel.

00:48:51.600 --> 00:49:02.310 Tommy D: All right, we're gonna come back and we're gonna talk about that more in a second because I want to know how can we help how who are the connections, you need who we're going to speak to yes on the let's make this across the country situation, but then also.

00:49:02.730 --> 00:49:16.320 Tommy D: Real I really want to know, I found something on the website at thrive at want to know about that, so we had a lot to cover and a little bit of time to do it so we'll be right back to me D in the attic with Elisa seager of the Al do lines will be back shortly stay tuned.

00:49:47.130 --> 00:49:49.740 About metaphors and how it impacts on your life.

00:51:16.230 --> 00:51:20.820 Tommy D: This is how you start your Friday morning media plan to be in focus amplifying the message for.

00:51:20.820 --> 00:51:27.720 Tommy D: nonprofit organizations and i'm actually sharing my screen for those of y'all watching on Facebook now live or watching on Facebook later.

00:51:28.260 --> 00:51:38.280 Tommy D: bunch of motorcycle folks are eating has a posse I see hundred back one of these T shirts, so there is a ride we'll talk about that in a second during the break I did show a couple of other things there.

00:51:38.880 --> 00:51:48.000 Tommy D: there's a virtual run more walk on September 18, so I am going to go back to the full screen for those you're watching us at least let's kind of get to come to.

00:51:49.050 --> 00:51:57.330 Tommy D: come to a bit of a close on this, what your angle is from a federal perspective I did also show during the break there's a letter on your website that.

00:51:58.110 --> 00:52:04.590 Tommy D: Constituents can fill out and then how sent it so let's talk about that i'm sure that's part of the whole outreach and what we can do.

00:52:05.040 --> 00:52:18.630 Elisa Seeger: Yes, exactly so i'll just give you the little bit of a backstory and again just saying that I thought it was you know really difficult to go and do this 50 individual times you know 50 states.

00:52:19.560 --> 00:52:34.800 Elisa Seeger: So in 2016 I had federal bills introduced by Senator schumer and congresswoman Clark, and the House, so what the bill said that it that it would mandate ld to all the States and give the state's funding to do this.

00:52:35.310 --> 00:52:42.720 Elisa Seeger: Because the number one issue, why states take so long is because they do not have the funding to implement.

00:52:43.920 --> 00:53:03.090 Elisa Seeger: Unfortunately, that didn't go well and we've made several changes over the years, but just fast forward to this year, and what we're doing so what we're trying to do is have appropriations added to the budget and that's what we've been working on i've been working with the lobbyists.

00:53:04.740 --> 00:53:14.910 Elisa Seeger: And I have to say this is now not ld specific, so the panel, that I was mentioning to you the recommended uniform screening panel actually has.

00:53:15.420 --> 00:53:36.360 Elisa Seeger: four conditions, right now, that are not being screened for nationwide So those are MPs one pompei ld and then SME, so what i'm trying to do is get funding from the Federal Government to go directly to the states, so they can implement sooner rather than later.

00:53:36.570 --> 00:53:43.110 Tommy D: Are you all for combine that is that what i'm hearing or the or ld is the one more focused on it.

00:53:44.190 --> 00:53:53.640 Elisa Seeger: Well, I what i'm trying to do is actually just changed the landscape of newborn screening because I don't think that my condition is more important than.

00:53:54.060 --> 00:54:08.580 Elisa Seeger: Any of these other conditions, I feel personally if we have a valid test, and we have a valid treatment method that's available, then we should be testing for these conditions and saving the lives of our children.

00:54:08.970 --> 00:54:17.100 Tommy D: So if we can as a society medicine is there and we can address these things, and why the heck not know that terrine issue early on, we could do something about it.

00:54:17.190 --> 00:54:18.000 Tommy D: Exactly.

00:54:18.180 --> 00:54:32.010 Elisa Seeger: So the huge disparity in this the huge problem is that we do have valid tests and we do have treatment methods we're just not diagnosing our babies in time, so they can be saved.

00:54:33.120 --> 00:54:45.270 Elisa Seeger: So, right now, any condition that's added to this federal recommended uniform screening panel can take a decade or more before 50 states are testing for it.

00:54:45.690 --> 00:55:10.170 Elisa Seeger: So imagine how many lives will be lost because of this time to implementation, so what i'm asking the Federal Government to do is allocate $15 million a year, every year, so that all states can become russ compliant by 2025 and I want this to be ongoing.

00:55:10.500 --> 00:55:13.050 Tommy D: So just what is russ are you.

00:55:13.170 --> 00:55:18.300 Elisa Seeger: sorry that it's recommended uniform screening panel.

00:55:18.570 --> 00:55:19.440 Tommy D: Oh it's really.

00:55:19.620 --> 00:55:21.270 Elisa Seeger: This yeah so it's sorry.

00:55:21.330 --> 00:55:24.330 Tommy D: I should have to say, did you see $15 million.

00:55:24.630 --> 00:55:36.120 Elisa Seeger: yeah so i'm asking the Federal Government to add this appropriations language into the budget so that we can direct this money, specifically for this cause.

00:55:37.140 --> 00:55:39.810 Elisa Seeger: Which is a drop it's a drop in the bucket.

00:55:39.900 --> 00:55:41.250 Tommy D: that's why that's why.

00:55:41.460 --> 00:55:45.540 Tommy D: I underlined it about 15 million bucks I mean it does a lot of money.

00:55:45.780 --> 00:55:56.820 Elisa Seeger: it's not a lot of money to the federal government, but this would be enormous for the States, because the states do not have the money to do it and that's why they're lagging.

00:55:58.770 --> 00:56:12.030 Elisa Seeger: So I you know we're really hoping we had this dear colleague letter that was introduced by Congressman zeldin who's actually out in long island and Congressman or congresswoman Clark, so it was bipartisan.

00:56:12.210 --> 00:56:17.760 Tommy D: i'm going to share that again, while you're speaking through it i'm going to share my screen everybody Okay, so you can see that, on the website, please continue.

00:56:18.270 --> 00:56:26.580 Elisa Seeger: And that was sent out to all the members of Congress, and we did have some signatures on it, which was great.

00:56:27.030 --> 00:56:41.970 Elisa Seeger: But we are now trying to do the same thing in the Senate and we're looking for Members of the Senate that want to support this so i've had several calls actually this week and I have several calls lined up for next week.

00:56:42.630 --> 00:56:56.400 Elisa Seeger: To find again who wants to be the cheerleader for this effort, because this is something very simple that we can do have the CDC direct this funding.

00:56:57.210 --> 00:57:07.020 Elisa Seeger: To make sure our babies are being saved because that's not happening right now and again it's not specific to al di it's specific to.

00:57:07.470 --> 00:57:19.380 Elisa Seeger: Every condition that has been that has gone through the evidence review process through the federal government, and they have already decided that these.

00:57:19.770 --> 00:57:30.630 Elisa Seeger: Conditions are viable, so you know it's met all of the criteria, meaning that the actual test works and that there's treatments to save lives.

00:57:30.720 --> 00:57:41.550 Tommy D: So here's what I need to know what can we do as citizens, people who are listening to this program myself what what can we do to to impact do we reach out to the to the legislators.

00:57:43.170 --> 00:57:50.340 Elisa Seeger: bless you, yes, so that is what we're trying to do, I mean if anyone wants to email me directly.

00:57:51.540 --> 00:58:05.640 Elisa Seeger: You know if anybody has contacts with specific senators throughout the country I have been having conversations with Senator gillibrand office, but you know we need this to.

00:58:06.720 --> 00:58:14.370 Tommy D: Alright, so here's what I want to do, I want to each month I me plan to bring focus I sponsor a member of the queen's chamber of commerce.

00:58:15.210 --> 00:58:25.770 Tommy D: I know you're in one of the other boroughs, but I would i'd love to sponsor you to be a member of the queen's Chamber of Commerce for the month of October I will pay an annual membership for you there.

00:58:26.490 --> 00:58:33.300 Tommy D: The song my theme song is from my friend Brendan levy, whose business development manager with the queen's chamber and my friend Tom Gresham as a CEO in fact they.

00:58:34.350 --> 00:58:37.110 Tommy D: They called me yesterday to give me a hard time and told me I needed a haircut.

00:58:37.380 --> 00:58:43.830 Tommy D: Because I saw a video of me, so what I did I put more gel in my hair and pulled it really tight back today so maybe they won't give me a hard time today shout out time.

00:58:44.250 --> 00:58:56.610 Tommy D: You fall when my buddy Brendan I want to buy you guys membership because they're connected and I can't make promises but i'm saying i'm calling it out on the show that so we'll talk about that, after the fact you're now remember the queen's chamber of commerce.

00:58:56.670 --> 00:59:06.480 Tommy D: And you can have them yeah right on, we can have them help you wouldn't try to make some connections, because who doesn't want to protect our babies, I mean this is kind of a no brainer so.

00:59:07.170 --> 00:59:18.600 Tommy D: All right, I want to we're running out of time, so a couple things I know you have some events coming up and I got to close the show too so let's tell me what what tell me about aiden's ride and tell me about the walk on September 18, which is a couple weeks from now.

00:59:18.960 --> 00:59:29.430 Elisa Seeger: Sure, so the aiden's rides were started, but my friend Kristen and West Virginia and, unfortunately, because of coven this last year and a half they've been really limited.

00:59:30.390 --> 00:59:40.050 Elisa Seeger: We also did have one in brooklyn which we were not able to have this year, but we are having the aiden's ride in morgantown West Virginia on October 9.

00:59:41.100 --> 00:59:51.600 Elisa Seeger: So that hopefully we'll have a great turnout and you know you pay to go on the ride and then afterwards we have food, and you know, try to raise money through.

00:59:52.320 --> 01:00:05.670 Elisa Seeger: different things that people have donated so they'll buy raffle tickets and all of that, and you know again because of code that our fundraising has been really limited So hopefully this ride will will be great.

01:00:06.390 --> 01:00:14.100 Tommy D: I love it so and you can find all of this out the website is a ld alliance.org and you mentioned your email, if you want to hear from people how do they get to Lisa.

01:00:14.550 --> 01:00:20.910 Elisa Seeger: Sure it's just a Lisa so he is a at ld alliance.org.

01:00:21.420 --> 01:00:30.030 Tommy D: Thank you, and I appreciate you I appreciate this new beginning of the friendship, I want to help in ways I can, through my relationships I I like to say, sometimes.

01:00:30.570 --> 01:00:40.530 Tommy D: I can write little checks, but I have friends who can write big checks so let's see what its relationships to it's not just the dollars, we know that so listen every single week Lisa, thank you for being here before I close the show.

01:00:40.530 --> 01:00:40.920 Tommy D: Thank you.

01:00:41.130 --> 01:00:44.010 Tommy D: I appreciate you I hope to meet you in person someday soon.

01:00:45.030 --> 01:00:56.940 Tommy D: And I i'm pulling for you, I don't know who wins the imagine awards for the night of the event, just like everybody else but um you know I think all these organizations are worthy organizations, but i'm super psyched for you to make it to the finals.

01:00:58.800 --> 01:01:10.020 Tommy D: I am Tommy D, the nonprofit sector connected this program is philanthropy and focus it happens every Friday morning at 10am Eastern time here on talk radio dot nyc and you can always check in on Facebook with us talking alternative broadcasting.

01:01:10.890 --> 01:01:19.020 Tommy D: What I want to tell you coming up actually this week coming up on pals the new show here in the network with my co host Valerie heffron my Pal foul I like to say.

01:01:19.410 --> 01:01:27.720 Tommy D: On Palace professionals animal lovers show we have Tina tractor who has a documentary called catnip nation, I haven't seen it, I look forward to.

01:01:28.230 --> 01:01:38.730 Tommy D: Learning more about it with Tina that's on pals on Tuesday, excuse me on Wednesday at 2pm next Friday morning Mary seller reels Faust CEO of human options out of Orange county California will be here.

01:01:39.330 --> 01:01:50.040 Tommy D: Domestic violence, obviously we know as a tragedy and she'll be talking about how that organization protects women and young people in those type of situations.

01:01:51.150 --> 01:01:57.030 Tommy D: At least I mentioned when we started the show earlier right before we were in the green room that Jeremiah fox is a friend of hers so.

01:01:57.300 --> 01:02:08.340 Tommy D: So stay tuned for two more shows on the network today Steve fry with friend of ours in price Murphy will be on the show right after my show so stay tuned step away, maybe get some coffee come back and listen to Stephen Ian.

01:02:08.880 --> 01:02:14.490 Tommy D: And then later on Jeremiah fox at one o'clock here on talk radio that nyc Thank you again and Lisa for being here.

01:02:14.880 --> 01:02:24.180 Tommy D: Thank you you're welcome, thank you for my listeners, thank you for my supporters kyle thanks for doing an excellent job on the other side of the glass you boy Tommy coming out from the attic i'll see you guys next week, make it a great weekend bye.

01:02:24.960 --> 01:02:25.260 Now.


download this episode of https://tabmaron.s3.amazonaws.com/talkinga/recordedshows/PIP/20210903-PIP-Importance_of_Newborn_Screening_with_ALD_Alliance.mp3

SIGN UP FOR OUR NEWSLETTER