This unique project is focused on bringing LGMD awareness to clinicians, patients, family members, and caregivers. The LGMD Advocacy Bundles project bridges the gap between clinicians and patients through advocacy support while supplying helpful tools and resources for staff and patients.
If you are interested in the LGMD Advocacy Bundle project for your clinic, please contact us at info@LGMD-Info.org
Project Goals
- 1
Bring LGMD awareness to clinicians, patients, family members, caregivers
- 2
Stress the importance of genetically confirming a diagnosis to help with symptom management and for accessing vital current and future clinical trials
- 3
Educate clinicians and patients about LGMD patient registries and the role they play in advancing research
- 4
Share the energy and passion of the LGMD community so patients and families can find support and do not feel alone in their LGMD journey
- 5
Bridge the gap between clinicians and patients (through advocacy support)
- 6
Provide helpful tools for staff and patients
- 7
Build clinical relationships and connect with new clinicians who are not yet well known in the advocacy community
Participating Clinic Sites
The initial clinic sites participating in the LGMD Advocacy Bundles project include:
• University of California, Irvine, CA
• University of Colorado, Denver, CO
• Nationwide Children’s Hospital, Columbus, OH
• INTEGRIS Neuroscience Institute, Oklahoma City, OK
• Washington University, St. Louis, MO
• Virginia Commonwealth University, Richmond, VA
Resources
LAB Patient Booklet
- Stresses the importance of and provides resources for genetic testing.
- Emphasizes the importance of and provides links to patient registries.
- Shares the energy and passion of the LGMD community so patients and families can find support and do not feel alone in their LGMD journey.
- Provides information on how to connect to peer support groups and where to access news and information about LGMD research and trials.
Clinic Artwork
Cure LGMD
About the Artist
“CURE LGMD” is a call to action by the community of persons living with these rare diseases. The multiple colors represent the diversity of the LGMD subtypes and patient populations, while the repeating panels emphasize the urgency of the mission.
Josh Thayer, who lives with LGMD 2B/R2, created the original image in acrylic paint using nine 6″ x 6″ canvas panels mounted on a foam board. Josh was inspired in part by Robert Indiana’s iconic 1960’s love image, which he has admired since childhood. Josh is a native Bostonian who works as the General Counsel of the Jain Foundation and enjoys art as a hobby.
John Spencer, who lives with LGMD 2I/R9, rendered the digital variants in Adobe Illustration. John is a UX Designer at Adobe. He resides in the Intermountain West and spends his time fishing local streams with his kids and exploring new places with family.
LGMD
About the Designer
Kae Tran is a Toronto-based freelance designer and member of the limb-girdle muscular dystrophy; LGMD 2B/R2 community. She began to experience symptoms at age 13/14 and was later diagnosed at 17. She is deeply involved in advocacy for the disabled and muscular dystrophy community. Kae has found a way to merge advocacy and education into her work.
After enduring many hardships and negative experiences, Kae felt extremely compelled to speak up for herself; she started sharing intimate details online about her journey and struggles with LGMD. She soon learned that there are many other people all over the world silently suffering with LGMD – as she once was.
Kae now makes it her mission to be a voice within the community and to raise awareness of the dire need for a cure.
Together We Are Stronger
About Us
LGMD Awareness Foundation is a patient-led advocacy organization dedicated to raising awareness of limb-girdle muscular dystrophy (LGMD). In collaboration with other LGMD foundations, our focus is to provide curated educational information and resources for the LGMD community and public.
By increasing awareness of and advocating for individuals living with LGMD, our goal is for individuals living with these rare neuromuscular conditions to have an easier time accessing a diagnosis, care, and treatment.
Carol Abraham, who lives with LGMD 2A/R1, is the founder of LGMD Awareness Foundation, a 501 (c)(3) tax-exempt public charity. In 2015, she also established LGMD Awareness Day which is celebrated worldwide on September 30th each year.
Our Advocacy Partners
