Wylder Nation Foundation

 MY BABY IS DYING, PLEASE HELP!
Everyone who meets Damian is instantly smitten with him. My 2-year-old is truly an angel on earth – sweet, smiley, social, and has recently started cupping his cheeks with his hands to form the cutest smile you’ve ever seen!

Damian was also recently diagnosed with a devastatingly fatal disease called Acid Sphingomyelinase Deficiency (ASMD), also referred to as Niemann-Pick Disease Types A & B (NPA & NPB). Damian’s case appears to be a mild form of Type A, the most severe form of the disease, which is characterized by an early onset (infancy) of progressive systemic manifestations such as:
 
·      an enlarged liver and spleen
·      loss of muscle tone
·      failure to thrive
·      rapid neurodegeneration (think baby Alzheimer’s) that leads to death typically by 3 years of age
 
Since Damian’s case is mild, he has a greater chance of living past 3 years old. However, any neurological damage that Damian incurs likely can’t be reversed, and if nothing is done to stop or slow the progression of his disease, he will likely die before his 5th birthday.
 
WE NEED YOUR HELP TO SAVE DAMIAN
Two potentially promising treatments are on the horizon, but funding is desperately needed to speed up the timeline and clear the pathway to a clinical trial.  With your help, collectively we have a chance to save Damian’s life.

Please, help me save my precious boy. Please #SaveDamian.
 
Whether or not you are able to donate, please spread the word and share this campaign with others. Thank you, thank you, thank you. <3

Love,
Brittany (Damian's Mom) and Brock (Damian’s Dad)

HOW YOU CAN HELP TODAY
1. Donate what you can, no amount too small (donations are tax deductible)
2. Share on all social media with the hashtag #SaveDamian
3. Email our GoFundMe and these steps to all contacts
4. Leverage any avenue you have to make this go viral (or send me leads/tips)!
 
- TIP! - DOUBLE YOUR DONATION
Many employers are set up to match contributions their employees make to any 501(c)3 non-profit charity, so please check with your HR manager as it could double your donation!
 
WHERE THE MONEY IS GOING
All contributions are tax deductible and go to the Wylder Nation Foundation, a 501(c)3 non-profit organization (Tax ID: 46-2849095) who has been funding this research that can give Damian a shot at life. 100% of the funds raised here will go directly to fast-tracking this research and what is needed to initiate a clinical trial.
 
The research includes a unique small molecule that passes the blood brain barrier (BBB) and has demonstrated remarkable results at potentially slowing or stopping the rapid course of neurodegeneration that happens in NPA. Additional research is surrounding a gene therapy that has the potential to replace the defective gene responsible for Damian’s disease with a functioning working copy of the gene for a more permanent treatment.
 
THERE IS A CLEAR PATH TO TREATMENT
1. Manufacture clinical grade drug production
2. Final safety studies
3. Get FDA approval to proceed with clinical drug
4. Start clinical trial

If you would like to donate by check, please make the check out to:
Wylder Nation Foundation (in memo write #SaveDamian)
 
Send To:
Wylder Nation Foundation
8924 E. Pinnacle Peak Rd
Ste. G5-574
Scottsdale, AZ 85255

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.

Hi! If you've made it here, you probably already know that I'm running the Hartford half marathon on October 9, 2021, and I'm doing it with the goal of raising at least $2000 to help babies born with rare fatal Lysosomal Storage Diseases, specifically ASMD (aka Niemann Pick Diseases).  

You can see the website linked below for much more detailed information, but in summary, children born with ASMD WILL NOT SURVIVE long enough to see kindergarten. THERE ARE CURRENTLY NO TREATMENTS AVAILABLE. Two potentially promising treatments are on the horizon, but funding is desperately needed to speed up the timeline and clear the pathway to a clinical trial, which could potentially help the babies currently living with this devastating disease.

Who wants to help me cross the finish line? Lucky for you, you don't have to run the 13.1 miles to help, you just have to donate to my fundraiser to benefit the Wylder Nation Foundation!

The Wylder Nation Foundation was created in memory of Wylder, who passed away from ASMD at 3 years old. The Wylder Nation Foundation is a 501(c)3 non-profit organization determined to improve the lives of children diagnosed with a Lysosomal Storage Disease by accelerating the discovery and development of treatment options. For more information on the foundation and ASMD please see https://wyldernation.org/

I hope you'll consider giving whatever amount you can in order to help me reach (or better yet, exceed) my goal, and help make treatment a reality for the children battling this disease, and their families.  If you can't contribute, perhaps you can share my fundraiser? 

Thanks all,

Rebecca

 

*Given my profession I feel I need to explain to you how this works and add some disclosure: I do not personally receive any of the funds. I will not personally withdraw money from this fundraiser. PayPal Giving Fund, a 501(c)(3) charity, will receive the donations and grant the funds to The Wylder Nation Foundation via PayPal or (if the charity hasn’t enrolled with PayPal Giving Fund) via check.

PayPal Giving Fund delivers money to charities on a monthly basis, near the 25th of the month, and typically within 15-45 days of the original donation (or 90 days if the charity has not yet enrolled with PPGF). Technically, you are donating to and will receive a tax receipt from PPGF, but the funds will go to the Wylder Nation Foundation. Thanks!*

Hi, I'm Mahmoud Al-Ashqar, and I'm raising funds for the Wylder Nation Foundation. This incredible organization is dedicated to improving the lives of children diagnosed with lysosomal storage disorders. With your help, we can provide hope and accelerate the discovery and development of vital treatment options for these brave children and their families.

Your support helps Wylder Nation Foundation make a difference by contributing towards efforts like:

• Providing crucial funding for groundbreaking research into new treatment methods.
• Offering educational resources and support programs for affected families.
• Increasing awareness and advocacy for lysosomal storage disorders in the medical community.

Every donation, no matter the size, brings us closer to a world where children facing these challenges have access to the care they need. Together, we can create a brighter future filled with hope and possibilities. Thank you for your generosity!