リード・モラノのインスタグラム(reedmorano) - 5月31日 23時40分

hey guys, this my sister's dear friend, Sam. I'm trying to help him save his son, Purnell. Just before Mother's Day, they learned their son has a rare and fatal disease. The only chance he has is gene therapy treatment- but it needs funding. I
just donated. See below and to donate - click on the link in my bio!
From Sam:
Just before Mother’s Day, our smiley, gentle Purnell was diagnosed with a rare and fatal genetic disease called Niemann-Pick Type A (think baby Alzheimer's). There is currently no available treatment and if nothing is done, it is unlikely Nell will make it to his 3rd birthday.
There is gene therapy treatment on the horizon that is within reach and the sole roadblock is funding. Time is of the utmost essence and we urgently need your help raising the funds by June 30 to give Nell the best chance to live.

We are calling on the generosity of family, friends, neighbors and strangers to help us #SavePurnell
With your help, we can reach this goal together and cure this disease once and for all.

Thank you all so much,
Taylor, Sam and Purnell

HOW YOU CAN HELP TODAY
1. Donate what you can, no amount too small and donations are tax deductible
2. Share on all social media with hashtag #SavePurnell
3. Email GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send us leads/tips)

WHERE THE MONEY IS GOING
All donations are tax deductible and go to the Wylder Nation Foundation , a non-profit 501c3 (Tax ID: 46-2849095) that has been working with the Bankiewicz Laboratory at UCSF, to make this gene therapy treatment a reality. 100% of the funds will go to the research and regulatory affairs needed to get this treatment to Purnell.
TIME IS OF THE ESSENCE
The average lifespan is 2 to 3 years and rapidly progressive neurodegeneration (think baby Alzheimer’s) normally begins between 15 and 18 month of age. Purnell is 13 months old.

THERE IS A CLEAR PATH TO TREATMENT
1. Manufacture clinical grade vector
2. Final safety studies
3. Get FDA approval for investigational drug
4. Start clinical trial

Follow the latest at www.facebook.com/SavePurnellToday #SavePurnell

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