The Road We've Shared

Join us in our chat with Sarah Lotfi, the writer and director of the live action short film, Menschen.  Menschen packs a lot of humanity into 30 minutes with the tag “Life Worthy of Life.” We, too, will try to pack a lot into 30 minutes as we hear more about Lotfi’s siblings, each with Down syndrome, her leading co-star Connor Long, and the many human stories and connections she’s experienced from the making of this impactful film. You can see more about Menschen on their website and Facebook. And Connor Long on Facebook.

Allie Guard is 25 years old and has her own business!  She creates beautiful art with colored pencils and bright colors.  The pieces are then either framed, turned into wearable art, or stationary items.  She has her own web store and Facebook page! We've been following Allie's works since we found her for our List.ly list of Businesses by adults who have Down syndrome. Allie and her Dad wrote a recent blog post to give us an introduction - now we get to talk to her LIVE!  Join us as we talk to Allie and her Mom, Sharon, about her life, business, and creativity! 

In Sherry's soon to be released book, "Life With Charley" she talks about the son she adopted when he was two months old.  Charley, who is now 21, has an infectious smile and a following on his Mom's blog and Facebook page.  He also has Down syndrome. Now Sherry tells her story via a memoir.   Join us when we talk to Sherry about what it's like to write a book like this, how she got started, and of course, life with Charley!

"Our mission is to create opportunities for those who may need extra guidance and encouragement to learn to maintain and appreciate a healthy and active lifestyle." A recent article in The Washington Post "Spirit moves them: Fitness program is tailored to people with developmental disabilities" caught our attention.  If you're interested in exercise and nutrition, join us when we talk to JARED CINER, Executive Director, Founder, and Certified Personal Trainer (NASM) at Spirit Club about their mission and how his team has been helping those with disabilities live healthier lives.  

Sarah will be starting high school in a few weeks.  If that's not exciting enough, she also has her own cooking show, Sarah's Great Day!  Sarah and her Mom, Valerie, recently held a workshop at the NDSC convention where she showed other teens and adults how to make their own guacamole.  You can find lots of her videos on her YouTube Channel.  We'll be talking to Sarah and Valerie about how the show started and what's coming up in the new season.   Join us to learn more about this exciting and different career that shows how teens and adults who have Down syndrome have can blossom with the right supports.

"Buddy Up Tennis is a weekly, high-energy 90-minute program focused on adaptive tennis, fitness, and fun for children and adults with Down Syndrome."  As parents of adults who have Down syndrome, we're always looking for ways to help our "kids" stay active and healthy.  Join us as we learn about how this program works!  Be sure to look for them in the Exhibit Hall at the National Down Syndrome Congress convention if you're going to be there!   When you do, be sure to tell them you heard them on The Road!  

Ethan Saylor died in police custody on January 12, 2013 in Frederick, Maryland as he was being arrested for trespassing in a movie theater because he wanted to see a second showing of "Zero Dark Thirty.".  Ed Rhodes has been working diligently for months trying to "piece together the story of Ethan’s death and what needs change in order to help prevent another tragedy."  The Road We've Shared is dedicated to Ethan Saylor's memory and legacy.  Join us as we catch up with the documentary film's director and find out where he is in the production process and what he's learned so far.   For more information about The Road We've Shared and how you can help us grow please visit our Fundrazr page.

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!

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.

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

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 !