March 17, 2013
Dear Family, Friends, and Colleagues,
A mass uproar ensued in Illinois and elsewhere this past summer when the Powerball jackpot hit $337 million. Like everyone else, we asked ourselves, “What are we going to do with our winnings once our numbers are picked?” Dave posed that question to our almost 13-year-old son, Jack, who gave a classic answer when he declared, “We should donate some money to charity; maybe something that helps animals and the homeless. I would like to get some new (video) games, but that wouldn’t take much.” Trust us, he was not kidding.
As most of you know, Jack has Cystinosis, a rare metabolic, genetic disease that presented itself 12 years ago. Like the Powerball figures, it has seemed at times that the “numbers” in our life with Cystinosis are overwhelming. There are fewer than 500 people in the U.S. with Cystinosis and approximately 2,000 worldwide. When he was one, Jack really did not eat solid food for 18 months and vomited 10-15 times per day. He had two feeding tubes that really helped him. Plus, his constant intake of medications 24/7/365 over the past dozen years has been a game changer where Jack is fully mainstreamed in what he does…that’s what swallowing around 100,000 pills and getting up in the middle of the night 4,400 consecutive nights can do for you! J
Time flies, so it is crazy to us that we are entering our second decade of writing this letter in celebration of Jack’s birthday upcoming on St. Patrick’s Day. We have enjoyed sharing our story and have appreciated your continued, kind, and generous support. Typically, our letters have framed our journey and retold what Cystinosis has taught and provided us. We thought our letter this year would be more direct and fact-based on some of the great work that the Cystinosis Research Network has accomplished. Most of CRN’s fundraising comes from grassroots levels, like this letter. Through our letter writing efforts over the past 10 years and your commitment and donations, we have raised nearly $200,000. While not $337 million, these funds have made a difference.
Over the past decade, CRN has:
· Funded nearly $3 million in research.
· Established and funded the Cystinosis Clinical Fellowship at the National Institutes of Health to ensure future attention to Cystinosis. Please note that this program is under the direction of one of the Cystinosis community’s most accomplished benefactors, Dr. William Gahl who was featured on “60 Minutes” this past year: http://www.cbsnews.com/video/watch/?id=7409146n.
· Conducted five international family conferences with a sixth planned for later in 2013.
· Staged medical symposia, exhibited at professional meetings, and worked to educate medical professionals and the public about Cystinosis in the U.S. and around the world.
Just this past year, CRN has:
· Produced a Parent Handbook on its website (www.cystinosis.org), which offers valuable information for patients and families that address diagnosis to development through transplant and beyond.
· Collaborated with the National Institutes of Health (NIH) to publish the Standards of Care in Cystinosis Treatment, including “best practices” available for doctors at the click of a mouse.
· Worked with Sigma Tau Pharmaceuticals who brought Cystaran to FDA approval in October 2012. These cysteamine eye drops will soon be available by prescription. For over 20 years this eye saving treatment has only been available to patients through compounding pharmacies or on a compassionate need basis through the NIH.
· Provided support to Raptor Pharmaceuticals who is bringing a delayed release formulation of cysteamine to market, which allows the life-saving drug to be taken every 12 hours instead of every six (the current treatment) and with fewer side effects. Currently in the final stages of FDA review, it is called Procysbi and would offer HUGE quality of life improvements.
· Planned for its 6th biennial Family Conference to be held in July 2013 in Washington D.C. It is a high point for CRN bringing together patients and families from all over the world with medical experts to learn, share, and bond.
· Taped a segment on Cystinosis that will be featured nationally on “The Balancing Act” on Lifetime Television at 7 am ET (6 am CT) April 9 and 11, 2013.
· Set to begin a new research study for this spring at the NIH to address late symptoms of Cystinosis in older patients, including muscle weakness/wasting and difficulty with breathing and swallowing.
We hope you share our pride in these accomplishments. When we decided to begin writing this letter, we did not know what to expect as baring your soul to share something so deeply personal is touchy. Our drive to help Jack, however, over-rode any reservations. In hindsight over the past decade, we have received and hopefully spread so much more than financial support in sharing our story…wisdom, perspective, love, hope, and joy, to name a few.
Jack and others like him have been given a tremendous gift, which is not Cystinosis. He has given all of us a tremendous platform to help us appreciate our own daily lives. That gift from Jack is captured in the words of wisdom and divinity from St. Francis of Assisi, who in part said, “Lord, make me an instrument of Your peace; where this is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; and where there is sadness, joy…grant that I may not so much seek to be consoled as to console; to be understood as to understand; to be loved as to love; for it is in giving that we receive…..” We have received so much in return for sharing our story and we hope it has helped you in some small way.
Please consider supporting CRN to not only honor Jack and others like him, but also help the organization continue to make progress. Thank you, God Bless, and have the happiest of St. Patrick’s Days as we wish you and your family the best.
Sincerely,
Dave “Jack’s Dad” Greeley Christy “Jack’s Mom” Greeley
As a 501(c)3 non-profit, advocacy group, your donation made payable to the Cystinosis Research Network is fully tax deductible. To be part of Jack’s 13th Birthday Celebration, please send your check to:
Cystinosis Research Network – 302 Whytegate Court – Lake Forest, IL 60045
(866) 276-3669 – www.cystinosis.org
Jack & guardian angel, Surprisingly, Jack just had his first visit The Greeleys represented the Cystinosis
Dr. Richard Sandler, who to the E.R. with a broken finger from a community this January in Washington, D.C.
diagnosed him at age 1 dodgeball game in February at the Sigma Tau annual meeting
The Cystinosis Research Network (CRN), a nationally recognized 501(c)3 charitable organization, supports the cause of improving the quality of life of those with Cystinosis through more research, better treatments and accessible family support, while ultimately seeking a cure (www.cystinosis.org).