Winter 2019 Newsletter

December 23, 2019

Dear Champ supporters,

The Champ Foundation wishes you a happy holiday season! We are excited to share updates about our year!

Tomorrow -- Giving Tuesday

Giving Tuesday is 12/3 and you have a chance to DOUBLE your donation on Facebook! The Champ Foundation is a tax-exempt 501(c)(3) organization and we hope you consider supporting us on this day of giving back!

If you choose to contribute to The Champ Foundation, here’s how you can maximize your donation:

Donate through Facebook on December 3rd. There are no fees for donations made through Facebook to tax-exempt 501(c)(3) organizations like The Champ Foundation.

Make your donation as SOON AFTER 8 AM ET AS POSSIBLE. Matching starts at 8 am ET, and the first $7 million will be matched.

For more information about Facebook’s Giving Tuesday, please see their description here.

Research updates

The most visible impact of The Champ Foundation is our support of the preclinical efforts at the Sheba Medical Center in Israel. In April 2017, we awarded the team $130,000 to conduct animal studies to examine the safety and efficacy of an exciting new approach called mitochondrial augmentation therapy. In July 2018, we awarded the team a second grant of $125,000 to continue to examine the results in mice, optimize the collection of samples from patients and determine markers of clinical efficacy. Both projects, as well as our conference in 2018, helped the team in Israel apply to the FDA for approval to conduct a clinical trial.

The team is conducting a Phase I/II trial to begin testing the safety and efficacy of Mitochondrial Augmentation Therapy (MAT). They are enrolling children with Pearson Syndrome in this clinical trial. You can see the clinical trial information here. You can read more about MAT here.

When The Champ Foundation was founded in 2015, there was no treatment for Pearson Syndrome, experimental or otherwise. The existence of a treatment that has the potential to improve outcomes is so exciting for all the families fighting this disease.

Champ Update

The Champ Foundation was founded in 2015 in honor of William Reynolds, who was diagnosed with Pearson Syndrome at 2 months old. He received a secondary diagnosis of myelodysplastic syndrome (MDS) in 2019, precluding him from receiving the Mitochondrial Augmentation Therapy in Israel. Since September, he has been in Boston Children’s Hospital recovering from a bone marrow transplant. William is not the first child with Pearson Syndrome to have a secondary diagnosis of MDS. More research and a better understanding of this disease is needed. The Champ Foundation is committed to supporting this research. Thanks for following along with Champ’s journey.

Support The Champ Foundation

Donate through Facebook for a chance for your donation to be doubled on Giving Tuesday!

Donate through our website or by check. Checks made out to The Champ Foundation can be mailed to 2712 Little Rogers Road Durham NC 27704.

Purchase Buffalo note cards as perfect stocking stuffer or holiday gift. $20 for 10 cards! Order by calling Mary Beth Holly at 716-912-4022 or emailing [email protected]

Give the gift of (Champ) gear for adults and kids. We also have limited quantities of baseball hats, rubber green bracelets, and bumper stickers. Please email [email protected] if you would like a baseball hat ($20), bracelet ($5) or bumper sticker. We will put them in the mail ASAP!

Shop Amazon Smile, a simple, no-cost and automatic way to support The Champ Foundation while you shop! Amazon donates 0.5% to the foundation of every eligible purchase.

Thank you

Thank you for joining our fight against Pearson Syndrome. We continue to be encouraged by the experimental treatment and other research projects. We are so lucky to have you in our corner.

Love,

Elizabeth and Jeff Reynolds

Co-Founders, The Champ Foundation