Dear Champ supporters,
Our website went live exactly one year ago today and this month marks the one-year anniversary of The Champ Foundation as an organization. What a wonderful, busy and encouraging year it has been! Here is our winter newsletter with some exciting updates.
William is doing remarkably well. His need for transfusions has slowed, dramatically. He hasn’t had a red blood transfusion in four months! We are not sure what this means, but going four months without an IV poke is good news for us. Luckily, he's also avoided any serious infections. We're still concerned about his weight, but our famous Pediasure and coconut oil milkshake has kept him gaining. We continue to have monthly hematology appointments at Duke Children’s and will follow up with the Cleveland Clinic (ophthalmology, GI, neurology, cardiology) in a few weeks.
William is an exceptional baby. He is curious, observant, and lately, opinionated. William’s gross motor skills have developed at an astonishingly quick rate, perhaps related to his lack of anemia. He might have been a little slow to walking and crawling, but we can’t turn our back on him too long or he will be on top of his slide! He can say “Daddy,” “more,” “I love you,” and can tell you the sound of an airplane, cow, horse, monkey and elephant.
All in all, if you'd have told us one year ago that William would be this healthy and happy, we'd have been overjoyed.
Research updates at Boston Children’s
The research team at Boston Children’s is continuing to work on mitochondrial genome editing, using CRISPR/Cas9 technology. With The Champ Foundation’s dollars, the Principal Investigator Suneet Agarwal has recruited a post-doctoral fellow, Dr. Sonia Dubois.
Dr. Dubois completed her Ph.D. in cancer biology at Institut Cochin, INSERM, Paris. Her research focused on cellular mechanisms driving lymphoma progression. She continued her research training as a postdoctoral fellow in Paris, in a project aimed at understanding the formation of large deletions in mitochondrial DNA that are associated with aging-related and genetic pathologies including Pearson Syndrome. At Suneet Agarwal’s lab, Sonia is working on engineering biological tools to reverse the presence of the mitochondrial DNA deletions in patient cells. We are hopeful that these tools can be used to develop new therapies for patients with Pearson syndrome. We are excited about Dr. Dubois’ arrival and believe her knowledge about mitochondrial manipulation will further the research and lead us closer to a cure.
A Call for Proposals and Science Advisory Board
We are very excited about our recent Call For Proposals. We are looking for research grants that are aligned with our mission to find a cure for Pearson Syndrome. Our newly formed Science Advisory Board will help us evaluate proposals. Our Science Advisory Board includes Dr. Dwight Koeberl (Genetitcs, Duke University) and Dr. Sumit Parikh (Neurology, Cleveland Clinic). Our proposal considerations include:
1. The probability of an advance in cure or treatment of mitochondrial DNA deletion diseases in the near term
2. Qualifications, experiences and abilities of the applicants
3. The conceptual basis upon which the proposal rests
4. The novelty of the concept and strategy
5. Clarity and thoughtfulness of the application
6. Adequacy of resources and environment (facilities available, access to patient samples if needed, data management, and data analysis, etc.)
Proposals are due March 1, 2017 and funds will be available in May 2017. Please feel free to share our proposal guidelines and requirements found here!
A note from Jeff Reynolds, President of The Champ Foundation and Champ’s dad
The Champ Foundation makes us very proud. We are proud to be actively, diligently and tirelessly doing our part to find a cure for this terrible disease. We are proud to have so many dedicated friends and family who have supported our efforts. We are proud that every dollar donated to The Champ Foundation is committed to research. The Champ Foundation has no paid employees and we personally cover overhead and operating costs.
The credit for The Champ Foundation's success belongs to our donors. We've been overwhelmed by the support and its led to significant steps forward. However, even with all the good news and updates, we have not achieved our mission. There is still no treatment or cure for Pearson Syndrome. One year ago, I wrote that I wanted to tell William, "You have Pearson Syndrome. It will be OK." I still can't say that to my son. We can get there, but we still need your help.
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. Hold a fundraiser
Some fundraising ideas include:
• Run a marathon (or half, 5k or mile!). (Champ supporters ran in the Tar Heel 10 miler and raised over $1300!)
• Poker/game night (Poker tournaments have raised over $800!)
• Spinning event (Champ supporters organized a SWERVE event in NYC and raised over $2000! TWO spinning events are currently planned for December 3 in Boston and New York City. Get in touch with [email protected] (Boston) and [email protected] (NYC) to sign up!)
• Garage sale (Champ supporters in Buffalo held a summer garage sale and raised over $500!)
• 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; The Brooklyn Cyclones had a Champ night and raised over $700; 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)
• Do you have an idea for a fundraiser? You can create your own fundraising page at Crowdrise. Create a fundraiser, set a goal and post to your own social media pages! Donations are automatically distributed to The Champ Foundation.
3. Shop Amazon Prime for The Champ Foundation
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.
4. Purchase a Buffalo Rising print
Molly Dee is Champ’s great grandmother. Molly is an internationally recognized artist, known for her larger than life paintings of turn-of-the-century photographs.
For the Buffalo Benefit last April, Molly donated a painting based on a Pan-American Exhibition postcard from 1901. All proceeds benefited The Champ Foundation. We are so fortunate to have limited prints still available. Prints are $35 and are perfect for a Christmas present! Call 716-912-4022 or email [email protected] if you would like a print!
5. Purchase gear
We are selling The Champ Foundation gear! For shirts, see our online store. 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!
Stay in touch!
The Champ Foundation wishes you a very happy holiday season! There is no time more fitting to say thank you for your support over the last year. Because of you, we reached our ambitious fundraising goal and are able to fund more research to find treatment and a cure for Pearson Syndrome. It makes our hearts so happy to have you in our corner.
Stay tuned for holiday cards from The Champ Foundation, but for now, here is a sneak peak of Champ’s holiday photo shoot.
Elizabeth and Jeff Reynolds