| | St. Mary's Gardens neighborhood fun run participants and cheerleaders Hayden Holloway, Lisa Weil, Dave Cunningham, Madison Kahn and Abby Cunningham. Photo A. Scheck | | | | | | With the cancellation of traditional Fourth of July festivities, Lamorinda neighbors found safe ways to reconnect while celebrating the birth of the nation. At one gathering on Gloria Court in Moraga, children decorated their bikes and scooters, parents took out loudspeakers, chairs, tables and barbecues and the party started. Old fashion games were organized such as a bike rally and an egg relay, all executed either within the same family or with proper social distancing.
Those who had been in neighborhoods for a long time were delighted and amazed at the number of children and new families who came out. In spite of the heat, the energy level was high and children threw firecrackers to add to the musical ambiance.
Moraga residents Rob Schwartz and Tom Shephard wanted to get their neighborhood out on the Fourth of July as well, and thought a safely-spaced fun run/walk would be perfect for their St. Mary's Garden neighborhood.
The nearly 50 participants, all residents of the neighborhood, ranged in age from 1 to 98. "People were given start times in one-minute increments and told to arrive five minutes in advance of their start time to avoid a big crowd gathering," Shephard said. "The fun run was free, but we gave neighbors the option to make a donation to the ALS Association."
Shephard's wife, Angela Seitz, was diagnosed with ALS (Amyotrophic lateral sclerosis) in February and currently experiences a slowness in speech and a weakness in her hands, but is still quite healthy and able to be mobile. St. Mary's Gardens neighbors contributed nearly $2,000 for the ALS Association. "The donations we collected go to the ALS Association which provides direct funding for ALS focused research studies to find a cure," Shephard said.
ALS is currently 100% fatal, and most people with ALS die within 2 to 5 years of diagnosis.
Seitz has her Master of Public Policy (University of Chicago) and is bringing attention to two bills that have been introduced in the Senate and House: The House bill, Accelerating Access to Critical Therapies (H.R. 7071), would authorize $75 million in funding to the National Institutes of Health and establish a Center for Neurodegenerative Diseases at the FDA. The Senate bill, Promising Pathways Act (S. 3872), could greatly shorten the time from ALS drug research to human clinical trial to FDA approval.
"There is currently no cure for the disease, but a great deal of research is underway," Shephard said. "We believe the disease can be cured, so more funding is needed.
"It was sad not to have the normal Fourth of July festivities in Moraga including the dog and bike parades and the concert/fireworks. But it was fun to get our neighbors out for the fun run," Shephard added. "It is nice to live in a community with such great neighbors."
To get involved in promoting these bills with your legislators you can visit: https://iamals.org/take-action-to-make-access-to-therapies/ or go to the Action Center at https://www.als.org/advocacy. Donations can be made to the The ALS Association Golden West Chapter. |