NOTE: these are the notes I took while doing the interview, which was almost 30 minutes long making it incredibly time-consuming to transcribe, though I marked the time at important parts.
An idea to come w/something to raise money for research on this type of muscular dystrophy (FSHD) facioscapulohumeral muscular dystrophy
Diagnosed w it at age of 14 - one of 9 different types of muscular dystrophy
MDs are diseases that involve progressive loss of skeletal muscle strength bc of the progessive dying-off of skeletal muscle cells
FSHD is the most prevalent type of MD (not by a lot) 12 out of 100,000
“It’s not a disease that very many do research on and there’s not a lot of money allocated for research on this disease.”
Been a supporter of a group that raises $$ for this (FSH Society) https://www.fshsociety.org/
Has mostly just made contributions, not actively raised money, thought it was time to do something active
How will your trip raise money for it? ( 7 mins)
“That’s something I’m still working on.”
Thought that it’s something that’ll draw attention thru social media, etc—will raise money as well as raise awareness, which will lead to money
Engagement w social and conventional media—interviews on television & radio when he goes thru towns that already have research going on, how he chose major destinations
Novelty will raise awareness, dog lovers will want to hear about gracies exploits (9:42)
How are you preparing? (10 mins)
Preparing for logistics: stamina, 25 miles a day, stop at different hotels; still many details to work out between now and april (when the trip starts!!)
Some things to figure out:
finding lithium batteries that have the capacity to (12:00) get scooter as far as necessary each day,
how will gracie travel?
Either design an appropriate side car that can be folded away, or her traveling in a trailer pulled behind him
Looking for corporate sponsorship by Pride Mobility, company that makes the scooter, offered to make a trip to Exeter, Pennsylvania, where they are located; asked them to make a donation to FSH Society, provide a scooter for the trip, provide spare parts and service, (15:00), have their engineers work w him in designing a side car for Gracie—in exchange he would be happy to advertise for them on the website, have media events as he goes along on the trip as long as they don’t obscure the main objective
Places where tthere are few and far between hotels there will have to be a support vehicle w volunteers
Plan to blog about it, shoot video, post on social media
Where are you going to start the trip? (18:00)
Ideally launched on Good Morning America or the Today Show in Manhattan
Route itself: (19:00)
Identified cities that have research groups in them, would like radio & television interviews joined by someone from the lab
Assembled from a combination of google maps, route called east coast greenway http://www.greenway.org/, trans america cycling route http://www.transamtrail.com/
Planning on ending in seattle, on west coast & has major research for FSHD
What are your ultimate goals for the project (22 mins)
“Not about elevating it to a position of more prominence or more importance than some other disease, it’s about making sure it’s included on the list of things that we care about solving. In many ways I would say that FSHD isn’t the worst disease in the world.” (23:00)
“Monetarily I’d like to raise a million dollars for research.” Ideally like to have something as big as the icebucket challenge (24:00)
All money will go directly to the FSH Society, also will do fundraiser beforehand to support the cost of the trip, (15-20k)
It will take between three and four months—try to leave somewhere in mid-April, still cool enough for Gracie (26:00)
(27:00) How sure are you that this will happen?
Part of the commitment is discussing it w people which makes it harder for you to back out
It’ll be a great adventure—not going 80mph on the highway, but 6 mph on a scooter, talking with and mtg people along the way, taking photographs and video along the way (28:00)!!!
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