These stories first appeared in the Information Point newsletter Our World in 2017.
The 2017 London Hope Walk took place on 20 May 2017. The walk took in 10 of London’s iconic bridges, beginning at London Bridge and ending at Battersea Park. Mel Spring from the Myotubular Trust told The Information Point about the event.
We had a great turn out for the 10k, 10 Bridges London Hope Walk – we were joined by over 70 walkers and four myotubular/centronuclear families. It was a particularly special day and the weather was very kind to us.
Yet again, we raised a wonderful amount in sponsorship, every penny of which will be used to fund world class research for myotubular and centronuclear myopathy.
Special thanks to those who had the picnic ready and waiting for us in Battersea Park, and to Bhawana and Kapil for surprising us at the finish line by bringing along their gorgeous one year old son, Arnabh, who has myotubular myopathy. What a treat for us all.
On 11 June, Will Ward (16) led his ninth walk team for the Beggs Lab at Boston Children’s Hospital Eversource Walk for Kids. Since 2009, Will’s team has raised over $70,000 for the Beggs Lab Congenital Myopathy Research Fund. Will’s mother Erin told The Information about the event.
The Beggs Lab is a leading research team at Boston Children’s Hospital that is dedicated to better understanding and searching for treatments for all congenital myopathies, including myotubular myopathy, the disease Will lives with.
This is the ninth time our family have joined the walk and this year we were joined by MTM family friends, Amy and Allie Welter of Minnesota. Amy and Allie are the mother and sister of, Andy Welter (15) who also lives with MTM. Allie is currently in Boston for the summer and is doing an internship at the Beggs Laboratory. Members of the Beggs Lab and The Manton Center for Orphan Diseases also participated in the walk including Genetic Counselor Casie Genetti and Dr. Pankaj Agrawal.
It was a hot day in Boston, but a successful event for supporting congenital myopathy research through Will’s Team. Many thanks also for the ongoing generosity of family and friends and this year in particular, Will’s Boston Marathon partner Kate Maul who made a significant contribution to Will’s Team’s fundraising efforts.