Blog: Awareness

Rare Disease Day 2016

It's Rare Disease Day and our incredible community has been busy this year spreading awareness about M-CM.

See television pieces for Paul in Illinois, Lani in Australia, and Kenzie in Michigan.

Stephanie Moreland has released her beautiful children's book about M-CM in honor of her son, Luke.

Jordan has Instagram posts about her experiences with rare disease and being part of the M-CM community.

La Asociación Macrocefalia con Malformación Capilar de España, the M-CM patient organization in Spain, launched their new website today.

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French M-CM Video

Watch this great video about M-CM from M-CM France by Dr. Jean-Baptiste Rivière.

Automatically translated closed captioning is available by hitting the cc button at the bottom of the player and then clicking on the sprocket icon to the right to change the language. The translation is not always accurate, but it is helpful.

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Brochure Now Available in Spanish as a PDF Download

We are very happy to announce that our brochure is now available as a PDF in Spanish, thanks to a community effort. Members of the Spanish language M-CM group created the translation. You can download the brochure here. Print copies will be available in the future.

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New M-CM Brochures Available

We have a new brochure available to educate friends, family, therapists, care providers and new patients about M-CM.  Email to request brochures and include the quantity desired and your full name and mailing address.  We are happy to send brochures internationally. For families engaged in fundraising, a donation insert is available. A special thanks to the families that contributed photographs. You can download a PDF of the brochure here.

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2013 Calendar Now Available

Our 2013 Wall calendar is now available for purchase on

UPDATE Nov 17 2012: in two sizes - [Small Calendar] [Large Calendar]

Many thanks to all of the families that contributed their beautiful photos.  Big thanks also to Deirdre Malfatto, who generously contributed color correction work on our calendar photos both this year and last year. 

There is a discount code available until Nov 23rd of 20% off 1-9 calendars: CHRONICLE Nov 27 of 51% off any number of calendars, use code DELIRITAS. If you'd like to buy 10 or more calendars, please contact me ( and I can put together a larger group purchase and get a steeper discount.

You may notice that this year's calendar is more expensive last year's.  This was an accident, Lulu provides templates and I set the whole calendar up in the wrong template and only noticed last night as I was publishing.  We make about $2 per calendar whether it's the big one or the smaller one, and regardless of whether or not you use a discount code.  There is a greater value for us in distributing the calendars widely than in the actual financial profit off of them, so don't be afraid to use Lulu's discount codes or get in on our group purchase.  I'm sorry about the more expensive calendar, but the plus is all of those amazing faces we were able to fit on the cover. If the price is a problem for you, please let me know and we can work something out with our bulk purchase.

We distribute these calendars to doctors and researchers that have a relationship to M-CM.  If you have a doctor or researcher that you would like to suggest, please get us their name and address and we will send them a calendar.

You may also notice a new M-CM Network logo on the cover.  We did some rebranding work with a wonderful designer in conjunction with developing a brochure. I will post more about that shortly.  The new logo will soon be rolled out everywhere.

UPDATE Nov 17 2012: We've now put together a small version of the calendar that matches the size of last year's and is less expensive. This is the calendar featured in the preview below.


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September is Hydrocephalus Awareness Month

September is hydrocephalus awareness month. Hydrocephalus affects many people with M-CM and the lack of progress in hydrocephalus treatment is shocking. Video via the Hydrocephalus Association.

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M-CM Mapped

M-CM parent, Joy Collins, has put together this wonderful map of M-CM cases with contributions via Facebook.  You can post to this thread to add your location, or email it to me and I will pass it on to her.

View in a larger map

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Interview on Who Needs Access?

Who Needs Access? is a website that promotes free and open access to scientific research by telling the stories of those affected by paywalled research publications.  Cameron Neylon interviewed me for the site to get the perspective of the rare disease advocacy community.  As a result, I got to share quite a bit of information about M-CM, our organization and what we are working to accomplish.  You can read the interview here.

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I logged into our Google Analytics account today and noticed a recent traffic spike.  We usually only get those if we've made some kind of announcement. We haven't done that lately, so I wondered what it was.  When I hovered over the data point I saw that it peaked on February 29, and then thought that was strange -- because I wasn't even online on February 29th. I was at the NIH for Rare Disease Day.

Oh, it was Rare Disease Day!

All of the things that patient families were doing to spread awareness about Rare Disease Day had a tangible effect. On Facebook, many families posted "Hope. It's in our genes." photos to the wall of the Global Genes Project.  We cross-posted these to our Facebook page and you can still see them there.  Global Genes made a book with the photos to present to officials at the NIH.  In Augusta, Georgia, 27 "Friends of Frances" ran in the Augusta half marathon in support of Frances Brown and all rare diseases.  The Augusta Chronicle ran a lovely story here.  In Preoria, IL, local television aired a segment featuring five year-old Paul Rodgers and his family.  Many families simply shared news of the day over Facebook and Twitter.

So, I wanted to acknowlege the effects of many efforts big and small and to let you know that it worked!

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M-CM Information Cards

M-CM awareness cardsA family asked us to make some cards like this to hand out to doctors, therapists, friends and family. If you'd like a stack of them, please email your mailing address to

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