Save Purnell Today
Tax deductible
Thank you for visiting our GoFundMe! Our campaign is still open and collecting donations for Wylder Nation Foundation, which is actively supporting ASMD (Niemann-Pick Type A and A/B) families on their quest for treatment. If you're new to our story, we invite you to read our update from May 29, 2021 as a summary of Purnell's journey and legacy.
UPDATE 07/01/17: All we can say is THANK YOU. Not only have you given us a shot to #SavePurnell, but the lives of future babies. The treatment we are collectively fast-tracking will lay the groundwork for clinical trials that will save more lives. That is incredibly meaningful change we are achieving together!
We hope you will continue to follow our story. We will be posting updates regularly and the GoFundMe page will remain active. All additional donations will continue to be red circled for advancing the gene therapy treatment to clinical trial, for future babies born with this terrible disease.
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, safety trials and regulatory affairs needed to get this treatment to Purnell and future Niemann-Pick Type A babies.
OUR STORY
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 our GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send us leads/tips)
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
Read More About Gene Therapy
Read More About Niemann-Pick
Read More About the Wylder Nation Foundation
In the Press
Parents.com
People
Daily Mail
Boston.com
Fox News
NBC Boston
ABC Boston
Fox Boston
Channel 7 Boston
A special thanks to the Bankiewicz Lab and the Wylder Nation Foundation for their tireless and selfless dedication to curing NPA once and for all.
If you'd prefer to send a check, please visit wyldernation.org/donate for details and include "Save Purnell" in the memo.
UPDATE 07/01/17: All we can say is THANK YOU. Not only have you given us a shot to #SavePurnell, but the lives of future babies. The treatment we are collectively fast-tracking will lay the groundwork for clinical trials that will save more lives. That is incredibly meaningful change we are achieving together!
We hope you will continue to follow our story. We will be posting updates regularly and the GoFundMe page will remain active. All additional donations will continue to be red circled for advancing the gene therapy treatment to clinical trial, for future babies born with this terrible disease.
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, safety trials and regulatory affairs needed to get this treatment to Purnell and future Niemann-Pick Type A babies.
OUR STORY
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 our GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send us leads/tips)
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
Read More About Gene Therapy
Read More About Niemann-Pick
Read More About the Wylder Nation Foundation
In the Press
Parents.com
People
Daily Mail
Boston.com
Fox News
NBC Boston
ABC Boston
Fox Boston
Channel 7 Boston
A special thanks to the Bankiewicz Lab and the Wylder Nation Foundation for their tireless and selfless dedication to curing NPA once and for all.
If you'd prefer to send a check, please visit wyldernation.org/donate for details and include "Save Purnell" in the memo.
Organizer
Sam Sabky
Organizer
Boston, MA
Wylder Nation Foundation
Beneficiary