Save Purnell Today

$727,804 of $750,000 goal

Raised by 10,230 people in 16 months
UPDATE 07/01: 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.
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It feels so surreal that one year ago today, just before Mother’s Day, we were sitting in the doctor's office receiving the worst news of our lives. Our sweet boy was diagnosed with a rare and fatal disease, and there was nothing we could do but cherish the time we have until the inevitable happened. How much HOPE has followed that fateful day. We went from no options to multiple options in less than a year. That’s light-speed in the medical world, and it’s all thanks to the efforts of Wylder Nation, doctors and researchers, and the generosity of family, friends and strangers. The power of the collective can move mountains, and we’ve been so inspired and are eternally grateful.

It’s been a while since we’ve provided an update, but so much has happened. This year has been full of ups and downs, steps forward and backward, advancements and delays; but overall, things have moved forward. So much new knowledge that will go to helping future babies. The gene therapy is in development but significantly delayed. Along the way, doctors learned of a very serious risk the gene therapy could pose to Purnell. Doctors and researchers are working together to tackle this problem, but the truth is gene therapy is unlikely for Nell this year. We always knew that it might not line up for Nell, and took great comfort in the fact that no matter what, it would help future NPA babies, and it will! The researchers are moving forward with the gene therapy for other children.

Hope does not stop there! Right around the time we were realizing that gene therapy was out of reach for Purnell, another project Wylder Nation was funding returned extremely unexpected and promising results. Six months prior we were told we had no options - now we were on to our second. We switched gears and focused our efforts on this new treatment option. We can’t share much at this point, but we can say that we are hopeful it is helping Nell and remain positive - which is easy to do when we’re surrounded by so many loving people.

We have never given up hope and Nell has not stopped fighting. He is a trooper! And we’ve created so many special memories this past year with our special man, and look forward to a whole lot more. Thank you all for your love and support - we will continue to keep you posted best we can and will keep our hopes high that we’ll have more positive news to share by next Mother’s Day.

With Hope Always,
Sam, Taylor and Purnell
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What a year 2017 has been. We began the year with a trip to Disneyland and celebrations. Then in May, our lives changed dramatically.

Even though it's only been a few months, it's hard to remember life before Nell's diagnosis.

When we began this journey, there was not even an option for treatment for Niemann-Pick Type A. We left the doctor's office with a death sentence. Then we learned of a gene therapy treatment that might be available in time for Nell, if only there were funding. So we launched a campaign and hoped for the best. And miraculously, with generosity we still can't fathom, we raised nearly $800K in a matter of weeks thanks to all of you. And that set the gene therapy treatment in motion for Nell and other NPA babies.

We knew all along that there may come a time when this treatment might not be viable for Nell, but we took comfort in knowing that we'd be advancing the science for the next child.

And while the scientists and doctors have been going above the call of duty to make this available in time for Purnell, we have been working vigorously at home to keep him as healthy as possible. It's been all-consuming: taking him to appointments and therapies, making sure he gets the nutrition he needs, keeping him constantly engaged, and -most importantly- showering him with love!

Progress is being made on the gene therapy development; however, there have been some delays that are pushing the timeline closer to April. While Nell is still doing well, we don't know what his status will be in a few months. We will continue doing everything in our power to keep him healthy for future treatment.

We continue to be blown away by the love, support, and generosity that has been poured out on our family. Purnell is a very special little man, and we hope so much that he will grow up so we can tell him about the amazing wave upon wave of kindness and hope that he inspired.

We wish you strength, peace, hope, and love in 2018. We are so grateful that you've chosen to walk this journey with us, and we pray for more miracles in the New Year. Thank you for helping us #SavePurnell

With Hope Always,
Sam, Taylor and Purnell
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Hi everyone!

Tonight is the night of the "Living Like a Warrior" Gala - an incredible event put on by Wylder Nation Foundation to accelerate the discovery of treatment options for children battling Niemann-Pick Type A. Sam is so excited to meet some of you incredible and generous people who gave us the best shot to #SavePurnell.

Those who can't attend can still participate in the online auction from your phone, which is LIVE. There are some fantastic items up for bid!

Http://warrior17.gesture.com.

With Hope Always,
Sam, Taylor and Purnell
Thank you for helping us #SavePurnell
+ Read More
Hi everyone,

Some major updates to share with you. First and most importantly, Purnell is the same smiley, interactive baby he's always been, AND with the help of a feeding tube, is packing on the pounds...he's over 20 lb.!!

The $750,000 we raised with the help of all of you amazing people is doing exactly what we hoped: funding the vector and the safety studies necessary for FDA approval, which are both underway.

Right now, Purnell is on track to receive treatment somewhere between December 2017 and early 2018. We will continue to do everything in our power to keep that timeline on track.

Thank you all so much for helping us get the ball rolling. There is much more work to be done, but we know that it's all possible with your continued love and support.

Lastly, if you live in the Denver area, or are looking for a great reason to visit, we hope you will join us at the Wylder Nation "Living Like a Warrior" Gala this October. Info included here:

https://e.gesture.com/events/6Nn/

With Hope Always,
Sam, Taylor and Purnell
Thank you for helping us #SavePurnell
+ Read More
Read a Previous Update

$727,804 of $750,000 goal

Raised by 10,230 people in 16 months
Funds raised will benefit:
Wylder Nation Foundation
  Certified Charity
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Scottsdale, AZ
EIN: 462849095
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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