June 2018 Newsletter

June 01, 2018

Dear Champ supporters,

We are excited to share some of our exciting progress and plans, and to announce the kickoff of our June fundraising campaign!

Research Updates

Our funded projects at Boston Children’s Hospital, the Sheba Medical Center, and the University of Cambridge have all brought us closer to real improvements for those fighting Pearson Syndrome. Dr. Minczuk’s group at Cambridge has reached the halfway point of their two-year project and made progress toward the development of a mouse model for Pearson Syndrome.

Perhaps most heartening is the news from Israel. The group there, led by a small company called Minovia, is in the process of setting up an FDA sanctioned clinical trial. The group has treated three patients so far under compassionate use and although it is still early, they have encouraging results. When we started The Champ Foundation there was no treatment for Pearson Syndrome, experimental or otherwise. We are thrilled that an experimental treatment is quickly moving toward the clinic.

Call For Grants

Last March, we released another call for grants in an effort to get more research started. Our strategy remains to allow talented researchers to focus their efforts on Pearson Syndrome by removing the financial hurdles presented by the pursuit of such a rare disease.

Proposals were due last week, and we are very encouraged by the quantity and quality of submitted applications. Our Science Advisory Board is in the process of reviewing these grants and we will keep you updated.

#GoodComesIn3

We are kicking off our June fundraising campaign. In honor of William’s 3rd birthday on June 22, we are celebrating #GoodComesIn3 and are asking supporters to donate $33 (or $13, $133, $333) to our online CrowdRise campaign. Our goal is to raise $3,333.

Through our social media accounts (Facebook and Instagram), we will focus on three things during our #GoodComesIn3 campaign: (1) Awareness, (2) Community, and (3) Funding.

AWARENESS: In order to find treatment and a cure for Pearson Syndrome, The Champ Foundation has needed to raise awareness of this disease and our cause. We are going to have The Champ Foundation Spirit Week to continue spreading awareness and educate our friends! Post your picture, link our CrowdRise fundraiser, tag @The Champ Foundation, and use #GoodComesIn3, #ChampStrong and #thechampfoundation. Here are the dates:

  • June 3: Wear Green Day
  • June 4: Post a picture with Champ
  • June 5: Coffee with Champ: Post a picture of your morning coffee, and bonus if it’s in a Champ mug! June 6: Champ around the world: Post pictures of Champ gear--we've seen those shirts, hats, and bumper stickers all over the world
  • June 6: Champ around the world: Post pictures of Champ gear--we've seen those shirts, hats, and bumper stickers all over the worldJune 7: Be #ChampStrong at the gym. Let’s see some gym selfies with the #ChampStrong pose
  • June 7: Be #ChampStrong at the gym. Let’s see some gym selfies with the #ChampStrong pose
  • June 8: Create a Champ sign

COMMUNITY: The Pearson Syndrome community is small, but also #ChampStrong. We will highlight a number of Champs who are fighting Pearson Syndrome. We are excited by the families joining our effort, sharing their stories, and holding their own fundraisers.

FUNDING: The Champ Foundation has been successful because of the generosity of many people, near and far. During this third part of our campaign, we will post about where our funds go, the projects we have supported, and why your donations are so important.

Check out Facebook if you would like to follow along and CrowdRise to donate. You are welcome to send a check instead of donating online and still contribute to our goal. Please send a check to 2712 Little Rogers Road Durham NC 27704 with #GoodComesIn3 in the memo. We can easily add offline donations to our CrowdRise campaign.

Champ Update

William is a happy, funny, and energetic almost-three-year-old. He loves to swim, swing, and cuddle. We consider ourselves the luckiest mom and dad, every single day. William makes our lives more wonderful than we could have imagined. He is the reason we started The Champ Foundation, and continues to be our inspiration to work so hard.

Thank you

Thank you for joining our fight against Pearson Syndrome. The fight is long and we are not there yet, but we are encouraged by the experimental treatment and our upcoming projects. We are so lucky to have you in our corner.

Love,

Elizabeth and Jeff Reynolds

Co-Founders, The Champ Foundation

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