Islandentity
Experienced Poster
Offline
My son Robert has MM
Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender:
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OK, I will chime in, Myself, Julie (Roberts Mom) Dave & Maria (Noahs Parents) have talked about this in depth. Noah and Robert had surgery together and 6 month check ups together.
I am now in a position where I can head a 501c3 up come fall.
I Have started a 501c3 before (fire department)
If we were to do this I feel the following..... the primary mission should be
A) to provide for or otherwise support the financial end of the costs associated with travel for the treatment of moyamoya, for the immedate family and Diagnossiee.
B) to provide for or otherwise support the financial end of a support group for mayomoya families( ie Moyamoya.com)
C) to provide a advocate in every State to argue for insurance coverage for the insured, underinsured or un-insured for coverage. also to provide support in every state for Families traveling out of their home state for treatment in regards to Moyamoya( someone to meet them and greet them tell them how to get from point A to point
D) to provide financial assistance into research and State and Federal insurance laws to make it easier for Moyamoya familiues to receive treatmenty.
So here is what I am saying,
A) When Robert needed his surgeries, I was blessed in the fact that our community of 1000 raised oiver 20,000 dollars to cover the travel expenses, I grew up in a big city ( over a million population and didnt see that too often), This may be done not only in dollars but also in discounts from Major chains IE TWA, Hertz, Ramada INN
B) as this is a Rare disease we all need the support of each other, I found this site when Robert was dianoised and his Dr. referred us to it. Also I think the Picnic (which we happened to be able to attend) and the reunion ( which we have not been to) are all huge in the " peace of Mind" and "Family sticking together" mentality that makes this bearable
C) (this Dave and I talked about) Dave is from San Diego, I am from Michigan, Dave & Maria choose to have treatment for Noah in state, We chose to go out of state for Roberts Treatment, Noah had insurance, Robert didnt, It took close to four months of arguing with the state to get him( Robert)approved for out of state treatment. We then had 4 days to plan a 30 day stay across country.
I know I am not the only one with the experience to "Fight City Hall" if we could get someone to explain to people within their state how to "get r done" and take the burden off the parents that would be huge. Be it Private or State insurance I am willing to bet we (moyamoya families are well represnted and have had that fight). Also it should not matter where we decide to go. I mean to say this I fought to go to Stanford (that may not be the right choice for every one) (Jill (gotchlorine) may disagree....but i still love her Cambell , and Tara) Consequently we need to show ZERO preduice in regards to where people go for treatment ( what ever is best for their Certain circumstances). However, if someone decides to go out of state, we need to have a support group(or Person waiting for them at the Airport) Make no mistake about it, Jill Tara, Cambell, Treasea , Matt Fong's Family, and even oneelse made it all tolerable once we got to the Hospital. It would have however been nice to have a Freindly face meet us at a unknown Airport in a previously unvisited state to show us the way around.
D) Their are avenues for the Hospitals to get funding for research, It takes a little bit more to make a State goverment understand that this treatment is needed, but it is still possible with the right people in your coner, that why this is the last concern. I mean to say this, the Treatment is already out there we need to fight for it, it takes zero money and alot of voice for the State Goverment to listen to us as Individuals howeve, as a whole we can chant ovcer and over what is important to us.
All that being said, I will pay the 500 dollars filing fee for the 501c3 I would need people interested in being officers, I know I am and Dave would be as well, We would also need members in as many as states as possible, ( one of the requirements is show how you grow) . I think we could not only raise dollars but also negoiate deals with many of the travel business to give Famieles traveling for Treatment a major discount. and also Memebrs of FOMMP (Freinds of Moyamoya Patients) a minor Discount for Travel for Receration and or Support
If you want to discuss this feel free to PM me here or my Private Email is pettmj@hotmail.com
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