The Stand Up For Down's Low Down (non profit)


Non Profit






September 2017
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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!

Direct download: SUFD20LowDown20232620-20David20Perry20-20Disability20Writer.m4a
Category:Non Profit -- posted at: 10:17am EDT

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

Direct download: Stand_Up_For_Downs_LowDown_25_-_The_Non-Profits.m4a
Category:Non Profit -- posted at: 4:46pm EDT

Stand Up For Downs LowDown #24 - Movers and Shakers

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!

Direct download: SUFD_LowDown_24_-_The_Movers_and_Shakers.m4a
Category:Non Profit -- posted at: 4:16pm EDT

SUFD LowDown#23 - A&E's BORN THIS WAY- Producer and Cast

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.

Direct download: SUFD_LowDown_23_-_Born_This_Way_Creator_and_Cast_Members.m4a
Category:Non Profit -- posted at: 6:40pm EDT

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 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!

Direct download: SUFD_LowDown_20_-_Dr._Brian_Skotko.m4a
Category:Non Profit -- posted at: 10:53am EDT

SUFD LowDown #19 - Brian Donovan - Creator of Kelly's Hollywood

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.

Direct download: SUFD_LowDown_19_-_Brian_Donovan_-_Director_of_Kellys_Hollywood.m4a
Category:Non Profit -- posted at: 10:54am EDT

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!

Direct download: SUFD_LowDown_19_-_Special_Olympics_CEO_Janet_Froetscher.m4a
Category:Non Profit -- posted at: 10:18am EDT

SUFD LowDown #18 - Katie Driscoll and Diane Grover

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!

Direct download: SUFD_LowDown_18_-_Diane_Grover_and_Katie_Driscoll.m4a
Category:Non Profit -- posted at: 9:42am EDT

SUFD LowDown #17 - Jen Jacob(DSDN) and David Egan(NDSS)

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.

Direct download: SUFD_LowDown16_-_Jen_JacobDavid_Egan.m4a
Category:Non Profit -- posted at: 10:22am EDT

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!

Direct download: SUFD_LowDown_14_-_Amanda_Lukoff_-_The_R-Word_Film.m4a
Category:Non Profit -- posted at: 8:28pm EDT