Everyone – parents, patients, family members and interested volunteers – is encouraged to call in and participate as we discuss important topics for the year. The agenda for this meeting is as follows:
- Welcome and Introductions
- New volunteer opportunities
- The Marcel’s Way Family Fund
- Awareness Week Initiatives
- Rare Disease Day ideas
- Speakers, topics and suggestions for monthly conferences
- Support groups, Camps
& Mito Socials - Events, including the SKR Derby Day Benefit, national walks and 5K runs, and education/awareness events.