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In this episode of Epilepsy.coms Hallway Conversations, Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews David Tolleson, Executive Director of the National Down Syndrome Congress, about Down syndrome and epilepsy.
Attorney and bioethisist Mark Leach will be talking to us about his upcoming presentation at the National Down Syndrome Congress Convention: "The New Era of Prenatal Testing: Answering Questions About the New Age of Genetics." If anyone knows the most current information on this topic it's Mark! Join us as we talk about his important work within the Down syndrome community and hear his thoughts about what we, as parents of adults who have Down syndrome, can do to help.
From an article by Maureen Wallace in AllParenting:
"Mark is dogged in his passion not only for his own daughter but for all people with Down syndrome," says Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital.
You can also find Mark on Twitter and LinkedIn
A representative from Ruby's Rainbow will be with us to talk about their program designed to "grant scholarships to adults with Down syndrome who are seeking post-secondary education, enrichment or vocational classes." They'll be presenting at the National Down Syndrome Congress convention in Indianapolis and we'll get a "sneak peak" at what they have to offer! Find out more about Liz and Tim Plachta, their beautiful daughters, and why they created this wonderful opportunity for adults! Check out their website to see some of the past recipients!
You can also find them on Facebook and Twitter!
She’s the proud mom of two sons; the youngest was diagnosed with Down syndrome after birth. She has also written, produced and directed the stage play “Then You Stand” and penned the award winning short film, “Never Alone” through the Studio 11 Films, 11Eleven11 Project. She has also launched “Have Ya Heard” in 2005 and hosting her own syndicated talk show, “The Yvonne Pierre Show”.
Yvonne is trying to bring awareness to Down Syndrome with her new play out.
Getting ready for the NDSC conference in Indianapolis? We're talking to some of the presenters and exhibitors who will be focused on adult issues. Our first scheduled guest is Marianne Marts from Joey's Ups with Downs. Marianne is co-guardian of Joey, her older brother who has Down syndrome. She'll be talking about her presentation scheduled for Saturday called "Calm to Crisis at the Flip of a Switch! How to Prepare for a Family Emergency Even if They "Don't" Want to Talk About It!" Marianne will also be in the exhibit hall with her book "Will You Be My Friend" that features his brother Joey.
Join us for a preview from this highly involved sibling who knows her way around the advocacy world and can help us understand the perspective of sibling guardianship.
We'll continue Saturday's conversation about what we're looking forward to learning from the National Down Syndrome Congress convention and what we need from our new community focused on caring for adults who have Down syndorme. This is your turn to give us input on what features you'd like to see, topics you'd like to discuss, or resources you'd like us to try to get. We'll also talk about all of the great guests we have lined up for the week leading up to the conference!
We hope you'll join us !
October is National Down Syndrome Awareness Month!Everybody has their Ups & Downs but not everyone has the experience of the "Heart Work" of caring for, loving and being loved by a person with Down Syndrome. During this broadcast Ms. E will discuss: What you may/ may not know about Down Syndrome Do you know... ...what it is? ...why it's called "Down" ? ...at what levels persons with Down Syndrome are capable of functioning? ...what happens to DS persons in the foster care system???
Ms. E will also talk about her recent book: "Entertaining Angels Aware: I AM My Sister's Keeper" a memoir about growing up with her only sister whom she refers to as "The Angel"; and the insights she gained while and since writing the book.
We're excited to have Sujata Bardhan, Ph.D and Melissa Parisi, M.D., Ph.D. from the Eunice Shriver Kennedy National Institute for Child Health and Human Development (NICHD), National Institute of Health (NIH) visit us to talk about DS-Connect the online research and data portal that launched in September of last year. We'll find out where you can connect with them at the NDSC conference and talk a little bit about their work so far. Drs. Bardhan and Parisi are very open to hearing your questions and concerns as parents/guardians and have already started a dialogue with us on The Road about how it can help the adult population. Join us to get a preview of what's coming up in Indianapolis and feel free to call in with questions or post them on our chat board while we're live on the air.
You can check out the registry site here.
Join pediatric speech-language pathologist Laura Mize, M.S., CCC-SLP from www.teachmetotalk.com as she answers an SLP's questions about treatment with 2 of her little clients. We'll be looking at the diagnostic differences between apraxia and dysarthria and the treatment differences she should consider for this little one with Down syndrome who is signing but has a very limited spoken vocabulary. The second client is a 3 yo little boy with severe expressive/receptive delays who is using some phrases at times. The SLP is considering a diagnosis of selective mutism, but we'll explore other possibilities. It's going to be a great show with lots of practical tips for differential diagnosis in addition to treatment ideas!
Julie Cevallos, from the National Down Syndrome Society, will be our guest on this show.
Julie will join Nicole and Terri to talk about ways in which students with Down Syndrome can be included in the classroom and school life.
For more information, go to www.theinclusiveclass.com.
Dr. Huntington Potter will be live to explain in plain language the importance between the Down Syndrome and Alzheimer's Link- and what this means to caregivers, patients, parents, physicians, health providers, and everyone who cares about both and related diagnosis and genetic disorders.
Dr. Potter is Director of Alzheimer's Research at the Linda Crnic Insititute for Down Syndrome, Department of Neurology, University of Colorado, Denver. His work is because of grants and support from the Alzheimer's Association and the Global Down Syndrome Foundation.
We'll get the opportunity to learn first-hand how Dr. Potter started this research, what it means to those in the Alzheimer's, Down Syndrome and related disease and disorder communities, and what it can mean for other medical work.
An unusual opportunity to talk first-hand to the leader of the research as it is happening and learn in terms so we can all benefit how this affects the lives of so many. Sign up via the comments on our site to ask questions ahead, add comments afterward, and to follow the research and community from the ground up.
On This Episode of The Beautiful Butterfly Show we will be Discussing " Understanding Down Syndrome". When it comes to Down Syndrome alot of people are often left clueless and to what it entails, how does it happen???... what its like for a child?? and what a parent goes through raising a child with Down Syndrome. Today Ms Teri The Advocate will be Joining us and sharing her personal story as she is raising a daughter with Down Syndrome!
***Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies born in the United States.
Though Down syndrome can't be prevented, it can be detected before a child is born. The health problems that may go along with DS can be treated, and many resources are available to help kids and their families who are
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