Our Team in the Community
The Neuromuscular Research Team enjoys engaging in many local events as well as hosting our own. Each year we organize and host a fundraiser to support our toy drive and to provide financial assistance to our families in need. Our community outreach includes participating in the annual Muscular Dystrophy Association (MDA) walks and donating toys to over 65 campers at the annual MDA summer camp. You will also see our team presenting on various clinical research topics at conferences hosted by the MDA, Parent Project Muscular Dystrophy (PPMD) and the JETT Foundation.
What's New
Becker Education and Engagement Day
Becker Education and Engagement Day began in 2023 when a group of individuals living with Becker, advocacy groups, clinicians, and researchers in Becker came together to design an opportunity for those in the Becker community to connect. The inaugural event gathered 150 individuals across four locations in the United States to learn about Becker care considerations, Becker cardiac considerations, exercise and physical therapy in Becker, and research and trial opportunities. The next event will be held on Saturday, September 28, 2024.
Scholarships Available
Route 79, the Duchenne Scholarship Program, was designed to help students diagnosed with Duchenne muscular dystrophy pursue their post-high school educational goals. The scholarship is named after the 79 exons in the dystrophin gene impacted by Duchenne. Sarepta knows that the route traveled by every person with Duchenne is distinct. Through this program, every year we acknowledge and support individuals with Duchenne who are taking charge and mapping out their future via educational pursuits. Scholarships of up to $5,000 will be awarded to each scholarship recipient.
The Muscular Dystrophy Association (MDA) College Scholarship program has been created to provide students living with neuromuscular disease the opportunity to follow their academic dreams. As medical advances open new doors for these students, MDA is committed to supporting their path to success by making higher education more accessible.
Past Events
The Neuromuscular Research Lab Crowdfund for equipment to enhance our research lab is now closed! Thank you to everyone who donated.
We serve patients with limited mobility requiring wheelchairs. Having a large research portfolio, many of our patients require their weight measured safely and accurately. Obtaining our own lift scale would allow us to be a more self-sufficient lab, as well as be more patient friendly. Currently, staff and patients will need to travel from the 3rd floor to the 1st floor clinic area to obtain a weight. The clinic lift scale is located in a commonly used hallway and we need to coordinate when it is convenient for clinic operations. Having our own lift scale will allow for patient visits to be shorter and more private.
Thank you to all of our Ruby, Sapphire and Diamond donors!
- Erica Keller
- Catherine Keller
- Michelle Tovar
- Jill Lancaster
- Michael Muth
- Sharon Shiraishi
- Susie Cummings
- Omaid Sarwary
- Carsen Anthonisen
- Miguel Borrego
- Nadir and Mayana Sarwary
- Donald Torretto
- Kristen Brockman
- Candace Aguilar
- Lorraine Schexnayder
- Eva Lee
- Folsom Lake Toyota
- Alina Nicorici
- Tunde Gyurics
- Susan Ellis
- Eric Goude
- Michelle Torretto
- Sarepta Therapeutics
- UC Davis PM&R Outpatient Therapies
Lab manager Erica Goude attended MDA Summer Camp Sponsor Day at Grizzly Creek Ranch, spending the afternoon interacting with campers and participating in activities with them.
Our Research Lab was excited to bring back our annual Halloween party! We had a great time handing out treat bags to our patients and getting to celebrate with them and their families. This year our theme was "Dr. McDonald had a farm."
Although we didn't have our traditional annual Halloween party due to COVID-19, we had a great time giving our patients bags of candy and toys as they came in for research appointments in the month of October, and of course dressing up on Halloween! This year our theme was "under the sea."
PPMD hosted their 3rd annual Duchenne Healthcare Professionals’ Summit in San Diego, CA. This event allowed our team to collaborate with other Duchenne Healthcare Professionals by sharing information and learning from one another. We were able to share case studies, data, and personal experiences to further lessen the gaps in knowledge about Duchenne care.
Our Research Lab had our 9th Annual Halloween Party. We would like to thank all our patients, families, community, and services that help our research. Our event had a great turn out and we look forward to next year’s Halloween party!
Our Research Lab donated a variety of toys to MDA Camp for the 10th year in a row. Toys included MDA Camp is hosted every summer where kids with Muscular Dystrophy and related diseases are able to spend a week doing outdoor activities and building friendships.
Our local Power Soccer team achieved the opportunity to participate in the US Power Soccer National Championship games. The team won a total of 5 games and had a great time playing. Congratulations to the Sacramento Valley Flames!
Our Unwind with a Glass of Wine fundraiser was a major success and we couldn’t have accomplished this without the support of our amazing community!! Thank you to all who attended, sponsored, or donated to our Fundraiser. The proceeds of this event will go towards the UC Davis Health Neuromuscular Research Lab, allowing us to purchase toys for children and provide financial relief for MDA families. If you didn’t get a chance to make it this year, please return to this page for details of our next fundraiser.
MDA of Northern California hosted their yearly walk on April 28, 2019. The MDA Walk is an awesome opportunity to meet families and raise money towards the MDA community. Our Research Team set up a booth where we handed out fliers about our numerous clinical trials and offered prizes to the children.