Your membership brings us another step closer to achieving our goal of ultimately curing MPS and ML. Together we work to provide support and information to families affected with MPS and ML; to increase public and professional awareness of MPS and ML; and most importantly – to further the vital research that adds quality to all our lives.
New member welcome package, including educational materials and resource guides
Connection to Pathways Program for newly diagnosed families
Access to publications and educational materials, including bi-monthly electronic Courage newsletter
Access to online membership directory
Access to Courage Pages – Personalized awareness and/or fundraising webpage
Eligibility for financial assistance grants and scholarships, such as: family assistance program for durable medical goods; conference travel scholarships; continuing education scholarships; medical travel assistance program; Extraordinary Experience program; journey assistance and regional social gathering funding
Complimentary annual family conference registration fees for individuals with MPS or ML and discounted registration for all members
Networking opportunities with researchers, physicians, families, board of directors and staff at the annual family conference
Bereavement programs, including Angels Among Us memorial publication, biannual Celebrating Your Cherished Life Experience conference and the White Rose program
Volunteer opportunities with board committee projects
Training and resources to become an effective advocate at state and federal level
Assistance with fundraising efforts from the development director and fundraising committee, including access to online fundraising toolkit
Voting privileges for the annual board of directors election
Access to our physicians database – a searchable resource to find physicians who have experience with MPS and ML
Several families have volunteered to publicize their personal e-mail addresses for private conversations with others who want to learn more about raising children with MPS and ML. If you would like to add your name to this list, contact us.