Connective Issues Spring 2018

VOLUNTEERS

MARFAN MOM FINDS A CREATIVE WAY TO GIVE BACK

affected by Marfan syndrome. Recently, she learned about Color Street nail polish strips, which her friend was selling. Said Michelle, “The product was fantastic and so easy to use that I imme- diately bought eight sets. This product was going to free up three hours a month in the salon chair, which is huge for me, and I believe in the quality and ease of use of this product. My friend also explained to me how easy it was to get set up as an independent stylist with Color Street. A little light bulb went off in my head that, if could sell this product in large quantities, I could use the commissions earned as monthly donations to The Marfan Foundation. I signed up that day!” Michelle is donating 95 percent of her commissions to The Marfan Foundation and, in her first two months, she has raised more than $1,000. Initially, her donations are going directly to Team Kendra in the Portland Walk for Victory (May 20). People who have purchased the product from her feel great that a portion is going to a worthwhile cause.

“SOMETIMES IT IS DIFFICULT TO SEE HOW YOU AS AN INDIVIDUAL CAN MAKE A DIFFERENCE IN A WORLD SEEMINGLY LACKING OR DEVOID OF HOPE. I PRAY THAT MY FAMILY’S STORY CAN HELP INSPIRE OTHERS TO TAKE UP THE MANTLE OF HOPE AND CHANGE. I AM SO VERY THANK- FUL FOR THE PARTNERSHIP AND SUPPORT FROM THE MARFAN FOUNDATION IN MY EFFORT TO INCREASE MARFAN SYNDROME AWARENESS AND FUNDING FOR THE GREAT THINGS THE FOUNDATION DOES FOR ALL OF US.” — MICHELLE GADDIE

Michelle Gaddie, of Oak Harbor, WA, first learned about Marfan when she read an article in a magazine that was randomly left on her seat on an airplane. She quickly got the feeling that the article described her then two-and-a-half year old daughter, Kendra. “I remember calling my husband as soon as I landed and implored him to make the first available appointment for a Marfan screening at the Mayo Clinic in Rochester, MN [near where she lived at the time]. “I believe to this day that the publication was left in that particular seat pocket for me to discover and I am so very thankful it was there.” Kendra, who is now 10, stands 5’ 7 ½ ” tall. She has been on medication to slow her aortic growth since she was diagnosed and faces a lot of the same challenges that many with Marfan face. She loves to draw Japanese Anime and is learning to play the piano. Michelle, who is a consultant for KPMG and travels every week for her career, wanted for a long time to do something that would have a positive impact on other children and families

“I do believe that it is going to be the small contributions of many individuals that will have the greatest impact in our society.” “When my daughter was first diagnosed, The Marfan Foundation was an endless source of information and resources for our family. I have always been so very appre- ciative of the work the Foundation does for our children and the families affected by this cruel disorder. I do believe that it is going to be the small contributions of many individuals that will have the greatest impact in our society.” Looking for a way to get involved? Please contact Suśan Sobers, director of volunteer engagement, ssobers@ marfan.org.

Spring 2018 7