Attention Content Creators:
Introducing Cure CMD’s Community Blog Initiative -
Content for You, by You.
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As you know, 2019 has been a big year for the CMD community. As 2019 SciFam recedes from view, we’re gathering the lessons we’ve learned and, coupled with your feedback, are continuing to make Cure CMD the place where you are represented, you are advocated for, and where you feel at home.
To that end, we’re launching the
Community Blog Initiative
to shine a spotlight on the CMD community - a place for sharing thoughts and issues you care about and sparking both awareness and conversations. Beginning in 2020 and led by Editor-in-Chief, community member Luke Hoban, we’re offering $50 per blog post of approximately 350-500 words, for up to 50 (approved) posts throughout the year. Your posts will be featured on the Cure CMD website, Facebook, and shared on other news outlets to grow awareness of CMD.
Blog posts don’t have to specifically be about CMD, but should relate, at least indirectly, to living a life with this ultra rare condition.
Rather
vlog
than blog? There’s also plenty of room for community created video content on our
YouTube Channel
. Get in touch with us to share your ideas.
- Your blog/vlog post idea(s) in fewer than 50 words
- Info about past writing experience, if any (previous experience not required!)
- Your/your child’s CMD subtype
- A short bio and head shot that will be shared on the Cure CMD website
We look forward to hearing from you and highlighting your voice!
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Learn About Proactive Pulmonary Care with Our New Guide
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Cure CMD is grateful for the tremendous voluntary contributions made by the authors of the CMD Pulmonary Guide, and their ongoing dedication to improving pulmonary care for affected individuals with congenital muscular dystrophy.
- Oscar Mayer, MD
- MyMy Buu, MD
- Robert Graham, MD
- Richard Kravitz, MD
- Oren Kupfer, MD
- Geovanny Perez, MD
- Hemant Sawnani, MD
Pulmonary care is complicated and no clinician can be expected to understand every possible disease with respiratory complications, especially in ultra-rare conditions. If your pulmonary care team is not familiar with the care standards in congenital muscular dystrophy, please encourage them to review this guide.
The CMD Pulmonary Guide is available
now
in two formats:
- Download the Cure CMD Mobile App in iOS and Android app stores
- Download the PDF here
This guide is currently only available in English. Interested in translating the CMD Pulmonary Guide to another language? Email us at
info@curecmd.org
.
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Announcing the Cure CMD Mobile App!
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Led by community member Liam Miller, the app is still in beta with additional features planned for future updates. Available for iOS and Android, this tool was designed to make Cure CMD’s extensive library of resources available to you on the go!
Headed to the doctor? The ER? Need to share vital information with with healthcare providers, home health aides, family members?
Currently included in the beta release is our new CMD Pulmonary Guide and Hypoglycemia Protocol (both also available in
PDF
). There is also a glossary of frequently used terms, a search function, and the ability to bookmark favorite sections.
Search
Cure CMD
in your
iOS
or
Android
app store to download today!
Have questions, thoughts or new feature requests? Email us at
app@curecmd.org
.
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Stronger Together: SciFam 2019 Recordings
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At long last,
some
of the recorded content from Stronger Together: 2019 SciFam are available for view on Cure CMD’s YouTube Channel. Subscribe to a playlist to be notified when additional recordings are added.
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Join the Cure CMD
Advocacy Team
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Want to be involved in legislative advocacy for Cure CMD but not sure how? The Cure CMD Advocacy Team is a great place to start!
Add your name to the email list and receive monthly updates on important events, legislative action, and meetings that will allow you to share your CMD story.
Contact Lani Knutson
(Cure CMD Advocacy Team Lead) for more information on how you can get involved.
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We are looking for Cure CMD community members to attend
Rare Disease Week
in Washington D.C. on February 25-28, 2020. Spend a few days with other Rare Disease advocates and learn to tell your story to your Members of Congress.
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2020 Research Grant
Request For Applications
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Cure CMD will be launching its bi-annual request for research grant applications in early December 2019. We are grateful for the ongoing community support which makes this program possible! Cure CMD accepts RFAs every 2 years and funds 4-6 research projects. Currently we are funding six 2018-2020 research projects.
Learn more about current research.
Cure CMD updated their research priorities which were
developed from meetings and discussions at 2019 SciFam's Scientific Symposium.
Learn more here
.
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Meet the new Cure CMD Board Members
Click on the name to read their bio.
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- Register in the Congenital Muscle Disease International Registry. Your data will help further research that leads to treatments and a cure.
- Set up a reoccurring gift through Cure CMD's website.
- See if your employer has a matching program to double the impact of your gift.
- Designate Cure CMD as your charity of choice on Amazon Smile.
- Host a fundraiser on Facebook for your birthday or any other special event. Contact us about how to integrate your fundraiser with Funraise, our donor platform.
- Host a local-area fundraiser. Contact Cure CMD board member Tim Knutson if you need help getting started.
- Join the CMD Community Blog Initiative.
- Subscribe to the Two Rare Mama Bears podcast and share it with a friend.
- Join the CMD Legislative Advocacy Team.
- Volunteer! Whatever your talents are, we need them! Complete this registration form to let us know you want to get involved. Your employer may also have incentives for volunteering.
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