CRAIN FAMILY FOUNDATION
ASSISTING FAMILIES & CHILDREN FACING HARDSHIP
HELP US MAKE A DIFFERENCE...
The Crain Family Foundation is hosting our third annual Swing fore the Kids Fundraising event at Topgolf! Meet and play with major league baseball players, past and present, fans, family and friends already here for Spring Training, enjoy great food, drinks, and company, AND support an amazing cause!
Our event will be held on Thursday, February 28, 2019 at Topgolf Scottsdale. Once again, we have partnered with The Newkirk Family to help raise awareness about rare diseases. Visiting The Clinic for Special Children was a "game changer" as far as getting specific treatment and care for their son Charlie. We, The Crain Family as well as the Newkirk Family, are passionate about helping other families visit The Clinic for Special Children as well as raising awareness about rare disease. All proceeds will benefit the Crain Family Foundation, The Clinic for SPecial Children and TGen's Center for Rare Childhood Disorders.
Maureen, Kris, and Charlie’s Story:
Our son Charlie was born with a rare genetic condition called Glutaric Acidemia Type 1. This was something we had never heard of until the newborn screening as it affects just 1 out of 40,000 people. He has been treated by the wonderful genetics department at Phoenix Children's Hospital but was only the fourth child they have seen with GA1. As we continued to do our own research about this disease, we found the Clinic for Special Children in Strasburg, Pennsylvania. Dr. Kevin Strauss and his team have treated over 100 children diagnosed with GA1 as well as several other rare genetic conditions. We knew that Charlie would benefit greatly from their research and experience and made the trip out there. Dr. Strauss met with us for three hours to examine Charlie and make adjustments to his treatment. As the worlds foremost expert in GA1, he gave us a level of comfort that no other provider could possibly give to us. We are so fortunate that he will continue to work alongside Phoenix Children's Hospital to ensure that Charlie will live a long and healthy life.
The Crain Family Foundation wants to make it possible for other families to visit this clinic so their children can have the same successes as Charlie. They are also contributing to the research done at the Clinic for Special Children that is too often overlooked for rare disease.
Maureen and Charlie at The Clinic.
Sweet, little Charlie.
Dr. Strauss, Charlie and Maureen.