Hope for GNEM
Supporting Families Affected by GNE Myopathy
Our Mission: To build a supportive global community for individuals and families affected by GNE Myopathy, a rare genetic muscle disease, by promoting awareness, connecting families, and developing resources for better care and quality of life.
We're just getting started on this important journey, and we believe that together we can make a meaningful difference in the lives of those navigating this rare condition.
What is GNE Myopathy?
GNE Myopathy is a rare genetic muscle disorder that typically begins in early adulthood. It's characterized by progressive muscle weakness and atrophy, primarily affecting the distal muscles of the legs and arms.
Community Support
Connect with other families and individuals affected by GNE Myopathy through our supportive community network.
Educational Resources
Access comprehensive information about GNE Myopathy, treatment options, and research developments.
Emotional Support
Find comfort and understanding through peer support groups and professional counseling resources.
Research Advocacy
Stay informed about the latest research and clinical trials while advocating for continued scientific progress.
Our Mission
Hope for GNEM is a newly formed non-profit with a vision to provide hope, support, and resources to individuals and families affected by GNE Myopathy. We believe that no one should face this rare disease alone.
We're in the early stages of building our community, developing educational resources, and planning advocacy efforts to improve the quality of life for those living with GNE Myopathy while supporting research efforts toward better treatments and a cure.
Key Facts
- • Also known as Hereditary Inclusion Body Myopathy (HIBM)
- • Affects approximately 1 in 500,000 people worldwide
- • Symptoms typically appear between ages 20-40
- • Currently no cure, but treatments can help manage symptoms
- • Research is ongoing for potential therapies
Our Leadership
Meet our founding board chair and learn about the key positions we're actively recruiting to build a strong foundation for the GNE Myopathy community.
Parva Thakkar
Founder & Board Chair
Passionate advocate and visionary leader who founded Hope for GNEM after his wife's GNE Myopathy diagnosis. Brings deep personal understanding of the challenges families face, combined with unwavering commitment to building a global support community and advancing research for better treatments and quality of life.
Medical Advisor
Open Position
Seeking a neurologist or geneticist with expertise in neuromuscular diseases to guide our medical initiatives and research partnerships.
Patient Advocate
Open Position
Looking for someone with personal or family experience with GNE Myopathy to represent patient perspectives and guide community programs.
Legal Advisor
Open Position
Seeking an attorney with non-profit law experience to guide governance, compliance, and legal matters.
Fundraising Director
Open Position
Looking for someone with grant writing and fundraising experience to help secure resources for our programs and research initiatives.
Community Outreach
Open Position
Seeking someone with marketing or communications background to help us connect with families and build our community.
Join Our Founding Team
We're actively recruiting passionate individuals to fill key leadership roles. As a startup non-profit, you'll have the unique opportunity to shape our organization from the ground up and make a lasting impact on the GNE Myopathy community.
Our Journey
Founded just days ago in August 2025, we're building a foundation for meaningful change in the GNE Myopathy community.
2025Building Our Foundation
- Sep: Submit 501(c)(3) application
- Oct: Complete board recruitment and establish governance
- Nov: Launch community outreach and connect with families
- Dec: Establish medical advisory board and research partnerships
2026Making Impact
Our Roadmap
Join Us From Day One
We're just getting started, and that means you can be part of building something meaningful from the ground up. Your involvement today shapes our impact tomorrow.
Resources & Support
We're building a comprehensive collection of resources to help you navigate life with GNE Myopathy. While we're just getting started, we're committed to developing valuable tools and support systems.
We're developing comprehensive guides covering diagnosis, treatment options, and daily living with GNE Myopathy.
Planning expert interviews, patient stories, and educational content about GNE Myopathy.
Building connections for local and online support groups for patients and caregivers.
Compiling information about specialists, clinical trials, and the latest research developments.
How You Can Help
As we're just getting started, there are many ways to support our mission and help us build something meaningful for those affected by GNE Myopathy. Every contribution helps us establish our foundation.
Get in Touch
Have questions about GNE Myopathy? Need support? Want to get involved? We're here to help and would love to hear from you.
Contact Information
Address
3324 E Ray Rd Num 575
Higley, AZ 85236
Important Note
If you're experiencing a medical emergency, please contact your healthcare provider or emergency services immediately.
As we're just getting started, we're building our support network and resources. We'd love to connect with you and learn how we can best serve the GNE Myopathy community.
Ways to Connect
Join Our Community
Connect with other families and individuals affected by GNE Myopathy.
Express Interest →Response Time
We typically respond to emails within 24-48 hours during weekdays.
Building Together
As a new organization, we're actively seeking input from the GNE Myopathy community to shape our programs and services.
Your experiences, needs, and ideas are invaluable in helping us create meaningful support for everyone affected by this condition.