The Stand Up For Down's Low Down

David Perry is a renown disability writer, and a professor of history.  His articles and contributions can be seen in The Washington Post, NY Times, CNN, Hufffington Post, The Atlantic, The Guardian, and many others. His writing is inspired by having a child with special needs(Down syndrome) and his extensive education as a historian and researcher. For more on David Perry and to view his work, please visit David Perry's Website.  Great episode with a lot of interesting and topical conversation about the state of the disability community right now and how it might look with the present administration.  Enjoy the ride!

Long but really great podcast where we interviewed 8 amazing non-profits at the National Down Syndrome Congress Conference.  Listen all at once, or pick a non-profit and forward to that point of the podcast.  We just hope you're entertained.  Big thanks to these amazing organizations for being a part of the LowDown. Forward to any time listed below to hear each interview: 1. National Down Syndrome Congress - Colleen Popp - 02:45 2. Buddy Up Tennis - 10:55 3. National Down Syndrome Adoption Network - Stephanie Thompson - 30:30 4. Down Syndrome Diagnosis Network - Jillian Benfield - 37:20 5. Down Syndrome Family Network - Glen Niles - 1:02:10 6. National Down Syndrome Society - Sara Weir, Kandy Pickard - 1:11:05 7. Gigi's Playhouse - Kristen Malek - 1:44:45 8. Buddy Cruise - Pamela Arnoldson - 1:56:55

We go back to the NDSC conference and interview 5 people doing incredible things in the DS and Disability community in their own very unique ways!  What a blast talking with all of these people.  Click on each name to learn a bit more about each person below. Maria Dellapina - 5:50 - Maria is the founder and CEO of Specs4Us.  She shares her story and a somewhat tragic story that happened to her and her daughter Erin this year, which every parent needs to hear. She was also named Toyota's Mother of Invention this year. David DeSanctis - 18:05 - David is the co-star of the major motion picture, Where Hope Grows. Marcus and Mardra Sikora - 30:40 - Marcus and his mom Mardra, are now officially both professional writers.  While Mardra has been writing and advocating for a while through blogs and published articles, as well as co-authoring A Parents Guide To Down Syndrome, Marcus is new on the scene with a very well done children's story called Black Day: The Monster Rock Band. Tony Piontek - 39:50 - Tony has been a self-advocate pretty much his whole life and has worked for or on the boards the NDSC, IDSC, and Global Down Syndrome Foundation to name a few.  Tony can always be found ready to talk, listen, and smile! Melanie Perkins McLaughlin - 45:10 - Melanie is a mother of a child with DS and an Emmy award winning filmmaker.  She recently produced a series of shorts for the NDSS entitled "My Great Story". Amazing work from an amazing person!

We went live at the NDSC conference this year doing over 23 podcasts. This podcast was incredible as we got to check in behind the scenes with the amazing producer and awesome cast of the Emmy-nominated Born This Way.  Can't say enough about this show and big thank you to BTW and these incredible people for allowing SUFD to interview them and open up about their thoughts, opinions, and great stories from the show.  Now go get that EMMY! If you'd like to jump around, you can forward to the following times: Laura Korkoian - Executive Producer - 3:20 Steven and parents Dave and Claudia - Cast - 29:20 Elena and mother Hiromi - Cast - 51:10 John and mother Joyce - Cast - 1:04:40   Apologies for the sound quality.  The interviews were conducted in the main hallway of the conference so there is quite a bit of background sound(which I think is actually kind of cool!) and for some reason, whenever the cast was being interviewed, A LOT of people were around. Please adjust your volume accordingly.

For the 22nd podcast, we are very lucky to get the amazing John C. McGinley.  John is an incredible actor who has been in numerous films, TV shows, and on countless stages.  If, for some reason, you do not recognize the name, you may remember him from his first film, Platoon. John C. McGinley in Platoon (NSFW language) Or you may know him as the ridiculously funny and irreverent Dr. Cox on the long-running sitcom Scrubs.  John C. McGinley as Dr. Cox on Scrubs But, in the Down syndrome and Disability community, Mr. McGinley has become a fierce advocate and vocal supporter and board member of such organizations as the NDSS, Special Olympics, and now serving on the board of the Global Down Syndrome Foundation.  Check out the clip below to here John talk about his mission with the Spread The Word Campaign. John C. McGinley talks about the R-word His passion for the Disability Community is recognized immediately in his voice, and we are so pleased he decided to share that as well as some incredible stories about his acting experiences that will leave you very upset this podcast only lasted an hour.  We would like to thank our friends at the Global Down Syndrome Foundation for helping us set up this interview.  Enjoy the ride!

Robb Scott had an incident that left his heart empty, and feeling very emotional.  Immediately following the incident, he got into his car, and poured his heart out and uploaded it to the internet. 100 million views later he has redeemed the missed opportunity during the incident and used an incredibly heartfelt and authentic moment to create awareness that can't be duplicated by any professionals out there. If you haven't see his video, you can see it here.  https://www.youtube.com/watch?v=pMsMPON4Sxo Great interview and discussion, and congrats to Robb for the awareness he's created through his difficult but very real moment showing a parent's heart.  

We've been wanting to talk to Dr. Skotko for a while now.  Dr. Skotko is a board-certified medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital. He has authored numerous books, performed amazing studies, and continues to find new ways to pioneer enhancements and research within the DS community. All this passion driven by his sibling with Down syndrome.  For more information on Dr. Skotko, please visit www.brianskotko.com. We can't thank him enough for the incredible work he has done and continues to do, and we are so glad he has honored us with this interview.  Great talk and a great guy!

Brian Donovan is an actor, writer, director, and producer who has been working in Hollywood for over 20 years.  After years of filming, he has put together the incredible documentary Kelly's Hollywood.  This documentary is the unbelievably moving and inspiring story of Brian's relationship to his sister, Kelly, who has Down syndrome, and Kelly's dream of being a star.  So many other plot lines come up during the film, and I highly recommend this movie for really just about anyone!  I loved hearing about Brian's perspectives, insights, and passion.  One of my favorite conversations ever!  Enjoy the ride.

Our 19th LowDown brings us the largest organization we've ever had on the podcast - The Special Olympics.  What the Special Olympics has done since their inception and founding by Eunice Shriver is nothing short of astonishing. Listen to CEO Janet Froetscher describe their history, what they're up to today, and how they have impacted this world.  Enjoy the ride!

The LowDown #18 brings two incredible women pioneering within the disability community.  Katie Driscoll is first up at the 2:35 mark.  Katie founded and runs Changing the Face of Beauty. She's been featured on The Today Show, CNN, and People Magazine, among others.  And now she gets to be a guest on the LD - how huge!  Then we bring on THE Diane Grover around the 1:10:25 mark.  Diane was the founder of The International Down Syndrome Coalition(IDSC), then after retiring from that she has now formed Dreamers Coffee House, which she is the owner and operator.  This is a very unique and cool idea which we hope has huge success.  Listen and enjoy the ride!

DSDN VP Jen Jacob comes in at the 4:10 minute mark to discuss the Down Syndrome Diagnosis Network and their first Rockin' Moms Retreat in Minneapolis September 11-13. Then David Egan, Fellow at the NDSS, and incredible self-advocate comes in at the 46 minute mark to talk about his life, his accomplishments, and his perspectives.  Plus, get to know who they're inviting to dinner.

For the 15th LowDown I've put together 2 solid interviews.  Gail Williamson kicks in at the 3:30 mark and goes to 55:30.  Gail is the Founder of Down Syndrome In Arts and Media.  Essentially she is the agent to so many actors, models, and otherwise talented individuals with Down syndrome and other disabilities that are appearing on TV, Film, Stage, and in print.  Paul Daugherty(56:30) is a sports columnist for The Cincinnati Enquirer and has written several books.  His latest, An Uncomplicated Life, shares the journey he and his wife have had in raising their daughter, Jillian, into adulthood.  Jillian has Down syndrome and recently got married.  Enjoy the ride.

Rob talks with Amanda Lukoff who is directing and producing The R-Word Film.  This documentary is tackling the R-Word both at home and abroad and interviewing some very key people who are big in this fight.  Listen to the very fun, funny, and ambitious Amanda talk about her passion for her sister and those with special needs that brought her to do this project.  And as a bonus, you get to hear an interview with my 11 year old son, Charlie.  He also talks about the R-word and how he's dealt with it at school and among his friends. (by the way, he handles it better than anyone I know!).  Listen in and enjoy the ride!

Very informative podcast with someone who has incredible experience as an attorney advocating for those with disabilities, and as a director of many non-profits.  Peter Berns is the CEO of the Arc of the United States and provides some amazing insight into the disability community and ways we can be working together to make some significant improvents in the lives of all those with disabilities.

Kris Polaha is an actor who has been in numerous televison and films.  Most recently he can be seen in the new FOX series, Backstrom with Rainn Wilson, but for this podcast, we are talking about his leading role as a retired, alcoholic baseball player in the movie Where Hope Grows.  A great guy who sheds some incredible perspective on life and working with his co-star David Desanctis, who has Down syndrome.  Kris also gives some good behind the scenes scoop on his time in Hollywood.  And of course, don't miss who his Top 5 dinner guests are. Enjoy the ride!

Best Buddies International is a huge and amazing organization helping build relationships between people with disabilities and those without disabilities all over the world.  Started by Anthony Shriver in 1989, they have grown to 1900 chapters worldwide and working with over 900,000 individuals in that time.  They have a great vision for the future, and David is leading them there.  Great stories from David who has had a personal drive to grow this organization from the time he was in college. Enjoy the Ride!

NDSC's Executive Director, David Tolleson brings his southern hospitality and terrific perspective to the LowDown.  Great conversation from a father and very experienced leader within the Special Needs Community. 

This one has 2 podcasts in one.  Sam and Mattie are 2 teenagers with DS who are making a zombie movie and a documentary about that zombie movie.  Sam's brother, and the creator of thier Kickstarter campaign, Jesse, is hear to chat with us. (12 minutes).  Then we bring in the Executive Director of the DSAIA(Down Syndrome Affiliates in Action), Deanna Tharpe to talk about a ton of stuff!(65minutes). Check out all the great things both of these two have to say.

The 8th LowDown brings Hollywood to our little show.  We've got the writer and director of the movie Produce on the line and get to find out all about him, how he came up with the movie, and how his view of people with special needs changed so dramatically while making this movie.  This is a podcast you will hopefully want to share with others.  Beyond all that, please do what you can to get the word out on this terrific film.  It shows such a great awareness of those with DS and the Special Needs community.  Enjoy!

Great, and yes, long but worth it podcast with Sara Weir from the NDSS, who will talk about all things ABLE Act and when we can see an actual vote, when the bill becomes law, and how long it will take to start using it.  Great Info!  Also at about 42 minutes in, we talk to Tim Harris and Sabrina Torreblanca.  THE Tim Harris is the owner of Tim's Place, and is the first person with DS in the US to own and operate his own restaurant.  Tim is fresh off meeting with the President, so we're happy he gave us some time.  Sabrina discusses the Harris' family new organization called Tim's Big Heart Foundation which helps entrepreneurs with developmental disabilities own their own businesses.  And of course, we learn about their dinner guests!  Great info and great conversations!