Supporting the Down Syndrome Community, w/ NDSS’ Kandi Pickard & Margot Rhondeau | EDB 247
Kandi Pickard & Margot Rhondeau share how the NDSS is helping the Down syndrome community.
(VIDEO – 30 mins) The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. Kandi Pickard is the President & CEO of the NDSS, where she provides vision and leadership, working collaboratively with individuals and organizations to support the entire Down syndrome community. Margot Rhondeau is the Senior Director of Health & Wellness for the NDSS, where she leads the creation of resources and programming to improve health and wellness within the Down syndrome community. They are also both mothers of children with Down syndrome.
For more about the NDSS: https://www.ndss.org/
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HACKIE REITMAN MD (HR):
Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today we’ve got from the NDSS, the National Down syndrome society. We got their big boss, the CEO, Kandi Picard, and the Margot Rhondeau, who’s in charge of their health and wellness education. And she’s going to say the right title. Why don’t you guys introduce yourselves properly here?
KANDI PICKARD (KP):
Excellent. Well, good morning. Thank you for for having us. I am Kandi Packard. I’m the president and CEO of the National Down Syndrome Society. I’ve been with NDSS, about six years now, I just celebrated six years in June, and really got involved with NDSS after the birth of my son Mason, who’s nine years old, and really felt a drive to do something bigger and something for him. And so I’ve been fortunate to kind of really learn a lot about NDSS and stepped into the role of precedent a couple of years ago and excited to kind of take the organization to the next steps.
HR:
Well, that’s great. Margot you’re up.
MARGOT RHONDEAU (MR):
Hi, good morning. Thank you so much for having us. My name is Margot Rhondeau. I am the Senior Director of Health and Wellness at NDSS. like candy, I’m also the mom of a child with Down syndrome. I was involved working in health and wellness for individuals with ID actually when I had my daughter, and after she was born decided that I wanted to move on over to NDSS and focus on Down syndrome.
HR:
Well, it all comes around, doesn’t it? Don’t we wish that we can get the whole world as invigorated about neurodiversity as all of us parents are, you know. Kandi, let me start with you because you’re the big boss. Okay. You’re the capo de tutti frutti here. All right. And you weren’t when I spoke at the, at the first ever adult Down syndrome Summit in Washington DC? Why was it the first because Down syndrome people didn’t live past 20, 30. But now they’re living well into their 60s. It’s a whole new bag.
KP:
I think what’s really and I and I appreciate the time here too, you know, NDSS is really, you know, we were founded by two parents, right, who really just wanted more resources and opportunities for their daughter, Carson. And today, we’re still really focused on doing just that, really recognizing those gaps that our families need, and their families experience and really kind of looking at what resources but also what advocacy initiatives, we have to fill them. And so, you know, for us, we’re really looking at the lifespan of an individual with Down syndrome. And as you mentioned, you know, our, our population is living longer. Now they’re living into their 60s and 70s, were in the 80s. They were living until 25. And I think it speaks a lot to not only the work that NDSS is doing, but what other organizations and early intervention and a lot of those pieces are bringing to our community. And so for me, it sounds like we want to continue to kind of support and we’ve really focused on three different areas of programming, and that’s resources and support, policy and advocacy, and then community engagement. And so we really look at our programs like the buddy walk in the adult summits and our galas. You know, those are what help us raise the funds to do the work that we do on Capitol Hill and to be able to provide the resources like the adult summit, and our aging and Alzheimer’s guides and a lot of different things that families need. But what’s really interesting for us and being that you are at the first adult summit with us is we’re really tapping into an area of families that I think felt left behind. And I think that it’s really interesting for us to be able to hear the stories of families that are saying like, it’s so great for you guys to be talking about aging and end of life and Alzheimer’s and all of these different experiences because they’ve kind of felt in the dark. And and for us, it’s really important for us to make sure that you know as many resources as we provide for pre and postnatal families and caregivers, we want to make sure that we’re providing for our adult population as well.
HR:
Really, it’s all about the cute little kids with autism and the kids with Down syndrome. Well guess what the kids turn into adults — and what are we doing? That’s where we talk about the things we’ll get into later that you’re tackling so well, not just the health and overall well being but things like employment, civil rights, and so on, which brings us up to Margot Rhondeau because you are kind of in charge of all that stuff. And you let Kandi take all the credit which we appreciate. We do.
KP:
They all do, the whole team does and I really appreciate that too sometimes, right? They do all the work.
MR:
Luckily I’m not in charge of all of that. Um, but I think you know what candy was saying is is as people with Down syndrome are aging, it’s really exciting. It’s a new frontier. But there’s a lot of families who are experiencing aging, and don’t have the luxury that I have, right like my daughter’s three. And I have generations of parents before me who give me advice or have learned lessons who can, who can tell me what to do and when to do it and help guide along the way, whereas parents of adults with Down syndrome don’t have that luxury because it’s new. And so a lot of people are experiencing things and learning lessons for the first time. And what we really want to do is help them write help guide as much as possible and helps capture the information either from lived experiences or researchers and share so that we can create a library of information to support all other families that are coming all the families that will be experiencing this stage of life.
HR:
Tell us how the ndss has been faring through this pandemic.
KP:
Yeah, I think we’re very similar to other organizations. I mean, it was it was a shock, you know, kind of how our team had to transition to kind of this virtual kind of space, I have to say that I think I’m really proud of them. Some of them are now living their best lives working virtually and are efficient and effective. We’re trying to kind of start to navigate a little bit more, and I’m in DC today and meeting with Margo trying to kind of, you know, start to kind of have these more of these in person opportunities for us. But I think as an organization, you know, we had to transition our national buddy walk, you know, program to being virtual and supporting our affiliates and buddy walk organizers with different types of materials and trainings to be able to kind of shift to be able to do that virtual format, we did a virtual gala this year was a lot of virtual pieces, which the world has done. But I think even as our families navigate this education was such a huge topic for us that we had to really help them kind of figure out school situations and how we empower families and our affiliates to be able to jump on a webinar and learn a little bit more about the IEP process or resources on therapies and different pieces like that. Because even you know, for me, and my son is in second grade, half the school year was virtual on it was probably the most difficult challenge that we had this year with, with school. And so one other fun thing that we did not always a series of fun thing that we did is we realized, like our self advocates in the social impact on our self advocates, our adult self advocates, and so, Colleen on our team kind of created these weekly coffee chats to where she would invite our self advocates to do this. And it was an hour of conversation, how they were feeling what was going on, you know, an opportunity for them to connect into chat. And then they had other conversations about their favorite Halloween costume, right, and went into a lot of fun pieces in that sense. And so that was a great way to kind of bring our bringing our community together. But you know, I think that what we realized in all of this, and now that we’re kind of slowly starting to kind of navigate this process of trying to do some in person events is realizing like, you know, I think we’ve reached more people as an organization with some of these virtual formats. And it’s something that we want to continue, not everybody can come, you know, to the adult summit in wherever the location may be, or to the New York City buddy walk, you know, on how do we provide that platform from a virtual format that makes families, caregivers and all the groups right, feel like they’re still part of the work that we do and how we’re celebrating our community?
HR:
What about Margot, from the education and health point of view during these COVID times?
MR:
Yeah, so with so education, I would have to defer to my colleague who’s unfortunately not on the phone with us. But from the health point: I mean, I think most of the people probably watching this, we most of the people in the neurodiverse community are really affected by the pandemic. Individuals with Down syndrome tend to be pretty scheduled with their days to the really embrace the routine, really social. And all of that really got taken away, like very quickly. And so all of a sudden, the world shut down. And it was really hard. And so and there were a lot of questions, right? And when COVID first came out, and we were still learning about COVID, but we were learning so much even more about how does this affect people with Down syndrome, a lot of people with Down syndrome have co occurring conditions, what was going to happen? There was a lot of uncertainty and we really tried to support the community as much as possible.
A lot of Down syndrome organizations, national organizations came together and created some resources for our community just to help answer questions about COVID and Down syndrome and recommendations of what shouldn’t shouldn’t be doing and we really enjoyed being a part of that and when I think it was really helpful for myself as a mother but but also professionally was really exciting. What happened is, you know, people in the beginning, hospitals weren’t allowing visitors. And so how could we support individuals with Down syndrome? who needed a visitor? And on a very, you know, family, local personal level, this needs to happen, right? I mean, somebody with down syndrome who is nonverbal or who has dual diagnosis should not be in a hospital setting by themselves. And so how can we work with families? How could we work with hospital systems to try to create an understanding and support the patients as much as possible? From a health perspective, I mean, a lot of what we do is create resources. And so we continue to do that, and really focus our resources on what was happening in the moment.
So a lot of COVID resources, but also the adult summit, we were able to take the adult summit virtual, it’s candy, we’re saying everything went virtual, which was really exciting, because we could engage more speakers, we could engage more listeners, we had one family from Hawaii that attended every session, and they loved it. And that’s something they would never have been able to probably afford flying and, and we learned some great lessons along the way. So as we go forward with the adult summit, what ways can we continue to engage? And what ways can we continue to offer the information to everybody, not just the people who have the ability or the finances to travel,
HR:
Talk about educating the Down syndrome community as well as the global population, on health topics as it relates to Down syndrome?
MR:
Yeah, so um, that’s a great question. And I mean, one of our we’ve recently created some guiding principles for the health team. And I think, too, that really stand out, or what is the diversity of you know, as we were talking before, that individuals with Down syndrome are so diverse, and their needs are so diverse. And how we reach people is different is, you know, very diverse. And so we can create resources and put them up on the website, and that will reach a sliver of the population. But not everyone, right? I mean, not everyone learns that way. And not everyone has a computer and internet to access. And so we’re really exploring, how do we go beyond that. So we have the adult summit in which we really target caregivers, and so empowering caregivers, both paid and natural caregivers about Down syndrome and what it means what to expect how to how to navigate the different scenarios. And so through the adults on my list, Katie was saying it’s an in person event. And so it allows for the education that happens between the speaker and the listener, but then also a lot of networking.
And so we really want to embrace the opportunity for parents to be able to talk to each other. Because all being parents on this call, I think we can we can attest to the fact that it’s really helpful to have a network. And so we’re doing that and taping this sessions and putting them on the internet so people can access it. But also just thinking through how do we go that step further? So we have an advisory committee, the scientific and clinical advisory committees, we’re really talking about that with them, right? Like how do we reach other families, so working with clinicians to create materials that then they could hand out to their patients? And that’s another sliver of the population. I mean, that’s not everyone as well. Also looking at ways in which we can go into populations that are not native English speakers, because you know, that there is a group of people in the United States that that don’t speak English, and who have the same needs the same have the same like health education needs. And so how can we how can we work with them? So it is a giant question, with a million answers. And we’re working through all of those.
HR:
Well, I think it’s very well said and the fact that the loved ones and caregivers can go to the NDSS as a resource is just huge, because, you know, you have to have a place to go and you don’t you know, you start out from scratch.
MR:
Yeah, exactly. In my in our goal, there are some downs and new clinics in the US, but there’s not enough for everyone. And so what we really want to do is empower caregivers to navigate the journey with or without a Down syndrome clinic. And there are some incredible providers who know a lot about Down syndrome and don’t work at the clinic. And then there are some who have never been exposed and are incredible, but just don’t know about Down syndrome. And so how can we empower caregivers and empower parents to work alongside their medical professional to learn what needs to be learned and to access other individuals if needed?
HR:
Candy? What is the one thing that you, as the capo de tutti frutti of the NDSS, would like the audience to know that they might not get about Down syndrome?
KP:
Gosh, you’re really putting me on the spot here of the one thing here. I try to think of — I put my son in here. And the thing I think, you know, and I see this on the internet a lot too, but maybe it’s presuming competence. I think That, you know, and being open minded to people who are different. And I think that speaks to outside of even just Down syndrome, I mean, folks that are considered different are discriminated against in different ways. And I think that, you know, there’s so many different ways to discriminate. And I think that with this pandemic, folks are realizing that kindness, and they’re realizing, you know, the community that’s around us is so important and embracing people, and giving these opportunities to people. And hopefully, that will continue, because, you know, we’ve made as Margo talked about these families that have come before us, we’ve made so much progress, you know, within the disability community, and specifically Down syndrome, but we do have work to do. I mean, you know, I could go on forever, you know, people are discriminated against organ transplants and not paid the same wages, right, all of this good stuff that the three of us know so much. But I think the general public doesn’t realize some of these discriminations that are so old and that are out there, that we have to work really hard to educate families about and be able to help them kind of navigate this process so it doesn’t happen to them.
HR:
Great. Margot, I’ll ask you the same question. But you’re not allowed to give the same answer.
MR:
I just say I agree with candy. In terms of like, ah, but I mean — so I mean, I think when when working when interacting with people with Down syndrome, absolutely, you should presume competence. But I would also embrace the differences. Everybody has different skills, right. And so I think a lot of times in the Down syndrome community, there’s, there’s individuals that are put on a pedestal and celebrated. But everybody with Down syndrome should be put on a pedestal and celebrated, right, like, you don’t have to be a lobbyist or a gymnast, or, you know, an author or an I love all of those individuals, right? But I don’t want to be any of those things, right? I don’t want to be lobbyists. I don’t want to be gymnast. I don’t want to be an author. And if my child doesn’t want to me those things, that’s okay, too. You know, she’s fabulous for who she is.
HR:
Can you speak to… We touched on it earlier, the NDSS relative to Alzheimer’s disease?
KP:
Yeah, Margo, do you want to kind of tap into some of the discussions we’ve had recently?
MR:
Sure, I’ll start and then you can fill in the pieces that I’ve missed. I mean, so we know that individuals with Down syndrome have a higher propensity to develop Alzheimer’s, than the neurotypical population. And this has been in the news a lot recently with the FDA approval of a new drug. And so there’s a lot of discussions happening. And we’re working on figuring out what exactly our role is because we obviously want there to be treatment for Alzheimer’s, we also very much want for these Alzheimer’s drugs to be tested on people with Down syndrome so that we know that they’re safe for our community. We are working on a lot with sort of three approaches.
One is working with families on education, about Alzheimer’s, in terms of how to recognize the signs, how to work with your doctor on diagnosis, making sure that it’s actually Alzheimer’s and not just a regression that’s being diagnosed, and really working with the families of just supporting them through the process and through the journey.
Then there’s the part where you work with providers on how to work with individuals with Down syndrome. So that makes sure that from their point of view, they understand the diagnosis and understand the progression and everything that happens. And luckily, we have some great physician partners working with us on that part.
And then the third piece would be working with Congress and working with the government to make sure that they understand as well, that people with Down syndrome have a higher propensity for Alzheimer’s, and that it’s earlier in age and so it’s a little different than the neurotypical population. So making sure that any laws that are passed or any programs that are created, include people with Down syndrome, because, you know, if it’s age base, then automatically our population we’ll be, we’ll be left out just because it tends to happen a little earlier. So really, with those three approaches, a lot of education, a lot of working together a lot of trying to fill in the gaps and connect the dots that maybe aren’t happening.
HR:
Kandi what would you add to that?
KP:
I was introduced to a family that there was a self advocate that was very involved in ndss. Prior to me, she was one of the first individuals who started and formed our self advocate advisory board. She was the first person with down syndrome to sit on our board, and she was young. She was in her early 40s. I don’t want to speak out o line but I believe that her early 40s. She was diagnosed with Alzheimer’s almost four years ago and she passed away last month like the progression and the speed of this disease on our community is, it’s fascinating to learn about, but it’s also devastating, right? Like, it’s devastating how quickly they got that that diagnosis of Alzheimer’s to where it was the end of her life. And so for us as an organization, as Margot said, I think it’s educating and understanding the differences. rikes we hear so much about regression versus Alzheimer’s, and there’s misdiagnoses is that happen? But, um, you know, I think that it’s about education. It’s about research. And I think getting people that understand research, I mean, we have friends, mutual friends who have donated their loved ones brains to help on this research and understand more about, you know, Alzheimer’s and Down syndrome.
And it’s a space that I think young families like Margot and myself are learning more about and trying to say, Okay, is there different approaches that I can take with my loved one that could offset some of these early, you know, onset symptoms that sometimes come in our community, because it’s not always in the 60s, sometimes it’s in the 40s. Sometimes it’s even earlier than that, from, you know, the research that I’ve read and our and our friends within the community that are sharing these stories. And so, for us, it’s working collaboratively as a community and how we can get this information into the hands of caregivers and parents and loved ones to be able to navigate this because the the correlation of folks that get have Down syndrome that get Alzheimer’s is it’s high.
HR:
Well, Jimmy Hendrix says it’s approaching 90% now.
KP:
I know and I hate using that number because it’s, it’s it’s as a parent, it’s scary, right? It’s scary to think that. Okay, what if I pass away and Mason… how is my family or my caregiver for him, like, how are they gonna navigate this? Right?
MR:
When I think I mean, we were talking earlier about how people with Down syndrome are living longer than they’ve ever lived before. And that’s really exciting. And so to be met with a pretty devastating disease is awful. And so I mean, I have this hope that by the time my daughter hits that age, there will be, you know, there will be a cure, there will be treatment, or there will be something. But that’s my reality. That’s not the reality of people living in it right now. And, you know, how can we how can we support people who are experiencing right now.
KP:
And I also tag into that Margot, I think it’s a matter of the resources our community, as we’ve talked about, is so diverse, you know, I’m able to have a clinic that’s close to me that I can take Mason to, and that not everybody has those resources. And so for me, as the leader of NDSS, right, is how do I get those resources into physicians hands or into medical providers hands? Because not everybody has is coming to ndss.org? Right and reading our materials? How do we get this into the hands of people who can get into the hands of the people who need this information?
HR:
How can our viewers, and listeners and audience at differentbrains.org, how can they learn more about and the NDSS?
KP:
Yeah, well, they can definitely visit our website at ndss.org we have, you know, all of our resources and current priorities, and p is there. I think that if they’re interested in kind of advocacy initiatives, we have opportunity is to become an ambassador of, you know, our advocacy and legislative priorities, which you know, are always very important for us for for folks that are experiencing, you know, some of these issues that we want to advocate for to share their stories with their local members and, and congressional representatives. Outside of that, I think, you know, supporting us in any way that they could by attending the adult summit or sharing information or you know, looking at that we’re on is to talk about LinkedIn, right? We’re on every every social media kind of piece even tik tok. We’ve had some really great, you know, opportunities to engage with a new group of, you know, advocates on tik tok. And it’s been very interesting, but we do share our information on all platforms, but our website is the most comprehensive way to kind of navigate where you want to get involved and how you would like to participate with our with our family and community.
HR:
Margot, would you have anything to add to that?
MR:
I would just add that we do have a helpline phone number and email address and that if anybody has a question that they can’t find the answer to or they want to speak to somebody, please call us and we love to speak to the community and we’re happy to help provide any information that we can.
KP:
Our 800 number is 800-221-4602 so that’s 800-221-4602 and the email is info@ndss.org
HR:
Is there anything else that we have not covered today that you’d like to cover?
KP:
I think the only other thing that I would, you know, add hackie. As I appreciate, number one, we thank you for inviting us today. It’s always fun to sit down and chat with you and, and hear what’s going on. But I think that as our community progresses, and an items and issues are coming up, you know, we want to the work that we do is based off of what we’re hearing from our families, and what we’re hearing within the communities. That’s how we base our initiatives and priorities as an organization. And so we look forward to virtually connecting with people or when the time comes to get on the road and do that, but we’re doing some adult summits coming up. So stay tuned for that we hope to be in person and have some virtual aspects for our adult families. And then bringing back and smaller little more safe spaces, some of our other events for folks that are comfortable and wanting to participate in some, but there will be the virtual aspect as well. But I look forward to whatever this new normal is with our community.
HR:
Kandi, can you look into the future and futuristically see what might be on the horizon in a different way for NDSS?
KP:
You know, I’m seeing when I look at the future of NDSS. I look at it in a few different ways. I think that there is definitely opportunities here for us to to look at areas in which we provide our families, more resources and more opportunities to empower themselves and connect with our affiliates. I think the big piece of that is going to be this digital platform that we described earlier. I think that this is where the world is taking us right now is a lot more digital, but also when we tie in kind of some of these other programmatic issues like health, you know, how do we combine that and make that very accessible for families to where, you know, we talk about research, for instance? You know, research — and you being an MD — research is very difficult for families, and even me and Margot to really comprehend and make it relatable. And so how do we help, you know, because we don’t do research as an organization, but how do we support those research efforts by making it manageable, and also helping those opportunities to become part of trials, right, making research, I think, a little less scary? I think I see a lot of research in our future, as a community, because I think there’s so many areas that we’re going to have to learn about how the effects of COVID are going to be long lasting around education, advocacy, a lot of these different pieces. And I think outside of that, I think as an organization, we just want to continue to provide, you know, long lasting resources that are going to impact new families, aging families. So you’ll see from us over the next few years, more conversations and updated resources from aging and Alzheimer’s, you know, aging and Down syndrome, but also looking at some of these, you know, opportunities and how our families can save money be more self sufficient employment opportunities. And so I think really enhancing a lot of the programs that we’re doing, but making sure that we have this, this this digital or virtual kind of aspect to it, because we’re seeing success with it.
HR:
That was great, Margot, anything you’d like to add to that wonderful dissertation?
MR:
No, I mean, I’d The only thing I would add in terms of aging and what we’ve mentioned before is somebody once said to us that successful aging starts young. And so really working to help working with researchers to help understand ourselves and then help provide information for families about, you know, how can we start? I mean, everybody, right? I used to do the same thing, but we know what are things that we can do as we’re young to help us age gracefully as we go on.
HR:
Kandi Pickard, Margot Rhondeau, NDSS – National Down Syndrome Society, ndss.org. Thank you so much for all you’re doing for so many, and we’ve learned so much about Down syndrome and about what your NDSS terrific organization is doing. Thank you for being here at different brands.
KP:
Thank you, Hackie. Thank you for having us.
MR:
Thank you.
