Event Raises Muscular Dystrophy Awareness

From Emily Bristol Sinopoli 

On Sunday, May 27th, the Clarke Farm/ Buckhide Road neighborhood, held their annual Neighborhood Fun Run!  Every year children from the neighborhood gather to run a half mile, mile, or 1.5 mile race together to honor a local child and raise awareness regarding a special need.  This year’s event honored not one, but three very special young people who have Duchenne Muscular Dystrophy.  The three honorees at this year’s event were Connor Mullaly (4) of Windham and Ben Safford (16) and Sam Safford (14) of Pelham formerly of Windham.   

All three boys were at the event and took part in the half mile race.  Young Connor did a portion of the race with the assistance of teenager Ben and his power wheel chair.  For the remainder of the fun run, Connor ran with the encouragement of Ben and Sam's younger sister, 13 year old Lydia. 

Thank you to the many families who participated in the event and made it a success.  Duchenne Muscular Dystrophy (DMD) is the most common childhood form of Muscular Dystrophy.  Duchenne most often strikes boys. It is very rarely found in girls.  DMD is progressive and can be inherited from the mother (as is the case with the Safford family). Or, the genetic defect can be spontaneous in the child (As is the case with the Mullaly family).  Duchenne is typically diagnosed between the ages of 2 and 8.  Muscle weakness begins in the legs and arms, and progresses over time to the point where power wheelchairs become necessary by age 12, and often earlier.

Teenagers with Duchenne often need tendon releases and scoliosis surgery. Because the heart and lungs are muscles too,  people with DMD  eventually lose their lives due to respiratory or cardiac failure in their late teens or early twenties. We ask for help to find a cure for this fatal, debilitating disease!   

To learn more about Muscular Dystrophy and to support families like the Saffords and Mullalys, you can purchase a book entitled Saving Our Sons and Daughters II  in which both families have been profiled. The book was written and compiled from the combined experiences of over 40 families including young people who have the disease, their parents and grandparents. Saving Our Sons and Daughters II  can be purchased directly from Lori Safford and Kira Mullaly.  You may email either of them at lorisafford@comcast.net or kmullaly@gmail.com. 

You can also make a tax deductible donation to help fund Duchenne MD research by donating to the Jett Foundation through Lori Safford who is competing in a triathlon this summer in honor of both her sons. This is an annual fundraising event for her! Last year, Lori's team, "Gals for Cal" raised $43,000, and over the past 3 years they've raised nearly $100,000 to fund Duchenne research! They're hoping to exceed that amount this year and they need YOUR help to do so. If interested, visit: jettfoundation.donorpages.com/GalsforCal/LoriSafford.