November 2017 Newsletter

November 27, 2017

Dear Champ supporters,

Happy Holidays from The Champ Foundation! This month marks the two-year anniversary of The Champ Foundation as an organization. We are so proud of what we have accomplished, and are so grateful for supporters like you who have made it possible. We hope you enjoy our Winter 2017 newsletter!

Champ’s health

We were abruptly reminded of the reality of Pearson Syndrome last month when William was hospitalized for acidosis. Some sort of viral infection caused his blood to become too acidic and his body could not correct the pH level in his blood. This is common for kids with mitochondrial disease, and is really dangerous for their overall health. To keep things extra exciting, this happened at the same time William’s baby brother was being born. It was scary to watch William become so lethargic (and painfully sad to watch him get poked three times during IV placement), but the treatment for the acidosis worked perfectly and he was discharged from the Pediatric Intensive Care Unit after one night. William was welcomed home from the hospital by his new baby brother, Teddy.

Importantly, William is continuing to thrive overall. He hasn’t had a red blood transfusion since August 2016 and he’s avoided serious infections. It’s been hard work, but he has remained on the growth chart for both height and weight. He still has an enormous team of doctors at Duke and we visit the Cleveland Clinic every 6 months, but we have been so fortunate to leave many of these appointments with good reports. We will visit Cleveland in a few weeks, and are hoping for more boring appointments!

Research updates

As you might recall, The Champ Foundation released a call for proposals last spring. We received promising projects from all over the world and were able to fund two. The first, “Treatments and models for diseases caused by mitochondrial deletions” (PIs Michal Minczuk and Payam Grammage at the University of Cambridge, England) is working to improve the function of the cells using therapeutic proteins, and provide pre-clinical data on the safety and efficacy of the approach. They are continuing to develop a DNA-editing tool to enable them to cut out mtDNA fragments at will.

The second project, “CD34+ cells enriched with blood cells derived healthy mitochondria as a treatment for Pearson Syndrome” (PIs Amos Toren, Natalie Yivgi Ohana, Elad Jacoby, Ann Saada at Sheba Medical Center, Israel) is going remarkably well. In fact, the doctors have performed their novel treatment on one child (and two more in the coming months) under a compassionate release. We are so excited about the promising preliminary results. This treatment is based on the transplantation of normal mitochondria in patient’s stem cells. The patient’s own bone marrow cells act as carriers of normal mitochondria (without deletions) and hopefully carry normal donated mitochondria to other tissues through the blood stream. The Champ Foundation is working closely with these researchers as apply to the FDA for a formal clinical trial in the near future.

Fundraising: A year in review

Because of you, we were able to fund the aforementioned research projects. Here’s how we did it:

1. #22for2 Campaign in June

We organized a 22-day fundraising campaign last June in honor of William’s 2nd birthday on June 22nd. The campaign was more successful than we ever could have hoped. We reached our goal of $6,222 half way through the campaign, and ended up raising over $18,600! We posted every day about Pearson Syndrome, William, and The Champ Foundation and you can read about those updates here.

2. Buffalo CHAMPionship Meat Raffle

While most people have never heard of a meat raffle before, the Buffalo community (once again) stepped up and helped us raise over $14,500 for The Champ Foundation by hosting this unique fundraiser. Nearly 300 people attended the amazing and fun event, and most left with an incredible door prize, meat prize, or raffle basket.

3. Aragona Family Foundation Grant

The Aragona Family Foundation donated $61,000 to The Champ Foundation earlier this fall! The Aragonas have been staunch supporters since The Champ Foundation’s earliest days. In fact, they pledged their support before we were even formally established. That first donation was instrumental in solidifying our resolve and providing confidence that we could meaningfully help in the fight against Pearson Syndrome and their latest donation was equally transformative. With three ongoing projects across the globe, our fundraising efforts had been directed at covering the commitments we’d already made. Now, thanks to the Aragonas and every Champ Foundation supporter, we can begin to think strategically and consider future projects. Thank you so much to the Aragona Family Foundation!

How can you get involved?

1. Giving Tuesday Donation

The Champ Foundation is a not-for-profit 501(c)(3) and all donations are tax deductible. We hope you consider making a year-end donation to help us find treatment and a cure for Pearson Syndrome. Every little bit brings us closer to a cure!

2. Give the gift of (Champ) gear!

Our green Champ gear makes the perfect holiday gift! We have short and long sleeved t-shirts, tanks, sweatshirts, coffee mugs and stickers! See our online store for adults and kids. We also have limited quantities of baseball hats and rubber green bracelets. Please email [email protected] if you would like a baseball hat ($20) or bracelet ($5). We will put them in the mail ASAP!

3. Shop with those who give back to The Champ Foundation

Amazon Smile

Amazon Smile is 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. Simply click this link and connect your Amazon account to support The Champ Foundation. So far, we have already raised $200 through Amazon Smile and it’s really got to be the easiest way to support The Champ Foundation!

Littlest Warrior

Littlest Warrior Apparel is donating 10% of all November sales to The Champ Foundation. Check out their great shirts for adults and kids here!

Whym Local

Whym Local sells handmade, repurposed and refinished home goods and donates 10% of all membership profits to The Champ Foundation. Check out their website here!

4. Host a fundraiser!

• Run a marathon (or half, 5k or mile!). (Champ supporters ran in the Tar Heel 10 miler and raised over $1300!)

• Garage sales (Ashlyn, a little girl in Utah with Pearson Syndrome, and her family raised over $2,000 with a garage sale!)

• Concerts (The Graduate School Association at the University of North Carolina at Chapel Hill hosted a concert at a local bar and raised over $700!)

• Be creative! (Champ supporters in Siesta Key held a Paddle boarding race and raised over $4,000; Four young Champ supporters held their birthday party in honor of The Champ Foundation and raised over $1,500; Two high schools in Buffalo participated in dress down days and raised over $700; Syracuse University Delta Gamma sorority sold mid-night nachos and raised over $1,500; The Duke MBA Class of 2017 hosted a CrowdRise page and raised over $1,000)

5. Stay in touch!

We love hearing from you! Email [email protected] and follow us on Instagram and Facebook to keep in touch! Join the conversation with hashtags #thechampfoundation and #champstrong.

Thank you

As always, we thank you for joining our fight against Pearson Syndrome. Thank you for participating in our online campaign, for attending the meat raffle, for donating, and for your support.

The fight is long and we are not there yet, but we are confident these new research projects will bring us closer to treatment and a cure for Pearson Syndrome. We are so lucky to have you in our corner.

Love,

Elizabeth and Jeff Reynolds

Co-Founders, The Champ Foundation

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