Spring Newsletter - May 2020
Greetings CMD Family,

On behalf of the Cure CMD team, we send warm wishes and hopes that you are well in these strange times, and finding ways to stay in touch with family, friends, and each other. Given this community's experience with self-isolation each flu season, we have some version of expertise on staying safe during this time. Despite COVID-19, we are hard at work to progress our mission and represent your voice in every aspect of our programming -- and with the new community blog, research grants being awarded, and the Chan-Zuckerberg Rare as One network kicking off, we want to hear a lot from you this year. Working remotely is status quo for the Cure CMD team, and we are as productive as ever, staying in touch via weekly Zoom meetings and Slack.

If there is something on your mind, we'd love to hear from you! As always, please feel free to reach out via email or social media.

Rachel Alvarez
Executive Director
WE ARE HERE FOR YOU!

Cure CMD is here to support you and your family during the COVID-19 pandemic. Resources can be found on the Cure CMD website at curecmd.org/covid19-resources . Be sure to check for updates during this constantly evolving situation.
 
We encourage individuals with CMD to have a back-up plan in place if a caregiver should test positive for COVID-19 and need to self-isolate. Also, you should review your sick plan as this virus will have a similar effect as other respiratory illnesses.
If you or your loved ones have been exposed to COVID-19 and are experiencing symptoms, please reach out to us at info@curecmd.org. We have expert clinicians standing by to assist with guidance and recommendations for your local care team.
SUPPORT FOR FAMILIES AFFECTED BY COVID-19
Cure CMD has partnered with Living in the Light and other organizations to create the I Stay Home For Rare initiative . This initiative strives to raise awareness and provide disaster relief funding for those affected by rare diseases in this time of heightened need. Tell your story, donate, or apply for assistance at IStayHomeForRare.org.
The CMD support community can also provide a source of strength and encouragement while we endure this period of social distancing and isolation. Find a full list of groups and how to join them.
RARE DISEASE WEEK 2020 REPORT

The Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February. Advocates participated in events throughout the week sponsored by Rare Disease Legislative Advocates (RDLA) , National Organization for Rare Disorders (NORD), the EveryLife Foundation, the Food and Drug Administration (FDA), and National Institutes of Health (NIH). Read more,
RECORD NUMBER OF PROPOSALS IN RESPONSE TO CURE CMD'S 2020 GRANT CALL
 
With a record-breaking 30 CMD-focused research grant proposals in his inbox, Scientific Director Dr. Gustavo Dziewczapolski is quite busy right now. However, we were fortunate to get some time with him to do a Q&A about this year’s grant call, which will award up to $50,000 in research funding for each of the five CMD subtypes: for Dystroglycanopathy, COL6, LAMA2, LMNA, and SELENON (SEPN1).
NEW AND IMPROVED
CMD INTERNATIONAL REGISTRY
After 11 Years, the Congenital Muscle Disease International Registry (CMDIR) is getting an upgrade. If you’re part of the CMD community, you’re probably quite familiar with the Congenital Muscle Disease International Registry, or CMDIR. (And if you’re not familiar with the registry, let us know ASAP. We have some very important information to share with you!) We have some exciting news that will enhance the way your, or your child’s, data is tracked and reported on, starting this spring.
QUICK NEWS...
Cure CMD to Launch Recurring Donor Campaign with #GivingTuesdayNow on May 5

To support nonprofits during this particularly challenging time, the #GivingTuesday folks have initiated a #GivingTuesdayNow campaign. Cure CMD will be participating in our own way, and celebrating our 12-year anniversary while we’re at it!
For two weeks, from Tuesday May 5 until our 12-year anniversary on May 19, we’ll be inviting our community to sign up to be Recurring Donors. For many families, this is more convenient than a single, larger donation. Monthly or quarterly recurring donations automatically and securely deduct from a bank account or credit card of your choice. As always, anything and everything helps! Even $5 per month means a lot to us, and more than 80% of your funds go directly to programs that fulfill our mission to advance research and improve the quality of life for affected individuals and their families.
We’ll keep you updated about the campaign, which launches May 5.
What’s your Communication Style? 

Cure CMD wants to know more about how you like to engage with us. Will you take this three-minute survey? 
Win Up to $3,000 by Creatively Showing How “Rare Diseases are Not Rare” 

The National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH), is asking you to communicate and educate people about rare diseases through social media or art. Be your creative, original self via music video, song, reading, poem, painting, mime, interpretive dance, collage — you think it, you do it, you win it! Deadline is June 15, 2020.
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Last year, you raised a whopping $7,000 for Cure CMD through your purchases on Amazon Smile, and we are grateful. You might be ordering online more than ever lately, and your purchases can earn Amazon contributions for Cure CMD. Choose Cure CMD as your shopping benefactor at AmazonSmile and change your bookmark to smile.amazon.com.
Did you know Cure CMD has a Mobile App!? It's a FREE resource for community members, available now for download on your Apple and Android devices.