CureDuchenne Champions empower Duchenne muscular dystrophy advocates to amplify CureDuchenne’s mission and to extend CureDuchenne’s impact throughout the globe.
CureDuchenne will provide information and education to CureDuchenne Champions in order to accelerate CureDuchenne’s mission through Community Outreach, Fundraising, and Advocacy. Equipped with this knowledge, CureDuchenne Champions will provide general support to local families in their designated area in partnership with CureDuchenne team members through:
- Identify newly diagnosed families and invite them into the CureDuchenne family
- Broaden outreach and participation in CureDuchenne events
- Provide feedback on CureDuchenne pilot programs and initiatives
- Represent CureDuchenne in local media
- Inform CureDuchenne of status of local care
- Listen for and inform CureDuchenne of community needs in terms of education, resources, programs, etc.
- Listen for and inform CureDuchenne of community insights and opinions on living with Duchenne
- Seek fundraising opportunities through hosting fundraisers, beneficiary partnerships, employee giving, etc.
- Identify local partners and sponsors
- Broaden outreach and participate in CureDuchenne fundraising events
- Network with key community leaders and influencers, telling the CureDuchenne story and sharing your personal family story on living/thriving with Duchenne
- Provide input on families’ perspectives on priority issues such as access, newborn screening and data sharing
- Listen for and inform CureDuchenne of opportunities to support medically underserved populations and those in medically underserved areas
- Bring potential state legislative or Duchenne-related policy issues to CureDuchenne for discussion and potential action plan development