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2022 SciFam: So Glad You Made It! |
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After nearly a year of planning, it happened this summer: One of the most fun, educational, bonding, exhausting, rejuvenating, let’s-stay-for-one-more-conversation weekends of the year. With 420+ individuals in attendance focused on three types of congenital muscle disease and hailing from 39 countries, the 2022 SciFam reached farther and wider than any conference we’ve hosted before.
As the CMD community knows, the organization’s mission and all of our programming centers the needs and wishes of the affected individual. With this in mind at every step of the way, SciFam emerged as an event in three parts: 1) expert-led update on research and care, 2) community-led sharing on topics that you requested, and 3) community-led opportunities for socializing and bonding.
Many of the sessions hosted at 2022 SciFam will be available for viewing on our YouTube Channel by early October.
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SciFam Spotlight: YA Programming |
At 2022 SciFam, we were excited to offer a slate of sessions geared specifically toward young adults. We sat down (virtually) with Kelly Berger and Avery Roberts — both young adults, and both who are a part of the Cure CMD Community Outreach and Engagement Team — and talked to them about the process of this all-important aspect of community outreach. Read More.
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Meet Our Newest Team Member |
Cure CMD’s new Director of Individual and Corporate Giving, Andy Mantione, brings 25+ years of fundraising experience in multiple roles in philanthropy. A graduate of the State University of New York at Buffalo, Andy’s work experience includes leading and serving in the Development departments for multiple charitable organizations. Read More.
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"All in the Family" Gets a Whole New Meaning |
In November 2020, (then) one-year-old Finn was diagnosed with CMD. His parents were devastated to hear the diagnosis and quickly learned that funding for this rare disorder was scarce.
Turning to people closest to them, the entire family gathered to propose a golf tournament to raise money for research. Not having any experience executing a golf tournament, they were grateful to find so many willing to chip in, donate, sponsor and golf. In July 2021, the first ever Swings for Finn Golf Tournament brought in over 256 golfers and volunteers. The event raised over $80k!
Going into year two, Finn's team felt good about the possibility of making the event another success. With great excitement, the families are happy to share that the Second Annual Swings for Finn Golf Tournament raised even more than the first year: $88k! Thanks to repeat sponsors, family like Finn's grandparents, repeat golfers, and new friends made year two another success. Read More.
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Lani's Blog: Playing the Long Game
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When our older son was 2 1/2 years old, we were told he has a rare neuromuscular disease that doctors and researchers knew very little about at the time. Our reaction was to ask two questions:
- What do we need to do to care for our son?
- What can we do to help further research?
The first question is an obvious one, but the second question is not. I’ve watch newly diagnosed families fade into their own world with little interest in learning about current research and development of treatments and cures. Conversely, some families frantically search for anyone doing research on their specific disease and hold fundraisers to support this research. Neither reaction is better than the other and both have their pros and cons.
We became the latter family. We found and enrolled in a research study that ultimately led us to a genetic diagnosis. We began an annual fundraiser, and in nine years, have raised over $100,000. All good things, but my impetus was reactionary. I wanted to DO something because there was very little else we could do. I wanted a cure immediately, because this was a problem to be fixed. Read More.
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We often hear this from our friends, even those who’ve been generous to us in the past. In this day and age, it’s a legitimate question considering that there are SO MANY worthy causes to contribute to.
The simple answer is this…Because Cure CMD exists to advance research toward treatments for the congenital muscular dystrophies and improve the lives of those living with CMD through engagement and support of our community. It’s right there in our Mission Statement. But, it goes so much deeper than that.
The research we’ve supported, with the help of our friends, has real world implications that improve the lives of those living with a CMD. The physicians, clinicians and family members who work in this field do so out of a genuine desire to address the issues we face, and advance to a cure. Their passion and drive are truly inspirational!
Just as importantly, we’re here for those in our extended family to say “I know this isn’t easy, because I’ve been where you are. And with Cure CMD’s help, I’ve found a way.” Each of the families in our community has a unique set of needs. Cure CMD understands those needs like few others can, because it’s part of our universe as well.
While there are logical and practical reasons to take this journey with us, they don’t compare to the feeling our friends get knowing their gifts are making a real difference today and well into the future.
For more information about ways that you can join with Cure CMD in this mission, get in touch! We'd love to hear from you.
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