Dear Champ supporters,
This is The Champ Foundation’s first newsletter! It has been an exciting four months. Here are some updates!
William is almost 9 months old. He receives a transfusion every four to six weeks at Duke Children’s Hospital. William is also a participant in the Cleveland Clinic’s Natural History of Pearson Syndrome. This is a prospective, observational study that follows children with PS to understand how it impacts their lives and health.
William is small, but does not present with other symptoms of Pearson Syndrome yet. With our mighty team of doctors (gastroenterologist, geneticist, endocrinologist, audiologist, ophthalmologist, hematologist, cardiologists, pediatricians), we are tracking and keeping an eye on anything that might fail in the future. We aim to keep every system functioning as well as possible until the research catches up (see below!).
Other than PS, William is a normal, happy, healthy baby. He sits, laughs, stands and is even trying to walk! William definitely has a great sense of humor and is very curious. We consider ourselves the luckiest parents in the world!
Two and a half months after we started raising funds, The Champ Foundation officially accepted its first grant proposal and provided $100,000 for a project titled “Mitochondrial genome editing for Pearson marrow pancreas syndrome.” Dr. Suneet Agarwal at Boston Children’s Hospital is aiming to innovate and apply novel approaches to deplete the mutant mtDNA in patients with Pearson Syndrome. Please email th[email protected] if you would like more information.
- March 2016 (Orchard Park, NY): Cappelli's Pizzeria in Orchard Park is doing a Round Up promotion for the Champ for the entire month of March! Eat pizza and give change for a good cause.
- March 31, 2016 (10:30pm-1:30am in Syracuse, NY): Syracuse University’s Delta Gamma chapter is hosting their annual DG Nachos and donating all proceeds to The Champ Foundation. Contact Laurie Beth Koller at [email protected] for more information!
- April 2, 2016 (3:30pm in NYC): Cycle for Champ at SWERVE Fitness. Contact [email protected] if you’d like to be on the waitlist for a bike or stop by for Champ hats and bracelets!
- April 24, 2016 (1:00 pm-6:00 pm in Buffalo, NY): The Champ Foundation, Buffalo Benefit will be a huge event with raffles, auctions, live music and food held at Buffalo Riverworks. You can buy tickets online or by calling Mary Beth Holly at 716-912-4022. Follow the Facebook event page for more information about auction and raffle items.
- June 5, 2016 (2:00 pm- 6:00 pm in Virginia Beach, VA): Fundraising event at The Wasserhund Brewery Co.! There will be live music, a silent auction, raffles, food and more. Wasserhund Brewery Co. has also chosen The Champ Foundation as their charity of choice for the month of June. For tickets and more information, contact [email protected] or 757-576-0318.
- July 22, 2016 (7:00pm in Brooklyn, NY): Champ Event at the Brooklyn Cyclones baseball game. We will have a booth and will be highlighted on the big screen before the game!
Media and Video Documentary
Additionally, Drawbridge Media, located in Raleigh, NC did a pro-bono documentary style video for The Champ Foundation. This video tells William’s story and our enormous hope for The Champ Foundation’s ability to influence research to find treatment and a cure for Pearson Syndrome. We are in the process of posting this video on our website homepage, and you can also see this video here.
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. Fundraising ideas include:
- Run a marathon (or half, or 5k, or mile!)
- Poker/game night
- Spinning event
- Garage sale
- Wear jeans to work/school day
Shop online and raise money 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.
Until April 21, Stella and Dot is holding a virtual trunk show and 20% of each purchase goes to The Champ Foundation. Check out their jewelry, bags and accessories here!
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!
We received our determination letter from the IRS and are exempt under Internal Revenue Code Section 501(c)(3). We are officially a public charity, meaning that all contributions are fully tax deductible since incorporation on November 4, 2015. We anticipated receiving this determination letter, and it is very exciting to have the official word. We are happy to share the IRS Determination letter. Please email th[email protected] if you would like more information.
Stay in touch!
We love hearing from you! Email any time to [email protected] and follow us on Instagram and Facebook to keep in touch! Join the conversation with hashtags #thechampfoundation and #champstrong.
We are so lucky to have this incredible group in the Champ's corner.
Elizabeth and Jeff Reynolds