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2015 MTM-CNM Family Conference is Over,
But Connections Continue!
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| MTM-CNM Family Connection Newsletter |
August 2015 |
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The MTM-CNM Family Conference planning team is grateful and happy to share with you some of the memorable details of the 2015 MTM-CNM Family Conference.
We will continue to share more information, pictures and videos from the conference in the coming weeks, so make sure to keep an eye out for our newsletters!
Please read on!
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The Place To Be
Over 200 people attended the 2015 MTM-CNM Family Conference which took place from July 24-July 26 in Chicago, IL, making it our biggest conference yet! 50 families gathered from our rare disease community, many familiar faces and many new as well! We were grateful to have several of our lead researchers and pharma industry professionals working on behalf of our community join us. Many families took advantage of the reduced room rate for our conference and arrived a day or two early, and some stayed a day or two after!
While we were enjoying this time together, we also held many in our hearts and minds that could not be there with us in person.
A big thank you goes out to Laura Furmanek and the rest of the staff at the Hilton Garden Inn Chicago O'Hare, who provided top-notch service, delicious meals, pristine rooms, and comfortable gathering spaces not to mention an accessible pool with a lift and zero entry ramp!
The staff and hotel served our wants and needs exceptionally! One especially thoughtful moment was when hotel staff used some extra flower arrangements to decorate tables in the "Reflection Room" devoted to honoring the lives and memories of our MTM and CNM "angels." These kinds of thoughtful touches and an overall consideration and attentiveness was the norm for many of us during our stay.
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 Speakers
There was a great lineup of incredible speakers, professionals who volunteered their time to spend the weekend sharing their work with us and getting to know us better. Presentations covered such topics as genetics and diagnosis, breathing and respiratory care, and development of potential treatments. While not all of the research discussed is able to be shared publicly at this time, we have several videos of the talks up on our
YouTube channel, with more to be released in due course. Please subscribe today to get the very latest!
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Fun Stuff!
There was a lot of fun going on at the conference too! The kids' room was full of activities from arts and crafts to video gaming. Everyone enjoyed Marvelous Masks who came both Saturday and Sunday to provide creative balloon art and fabulous face painting. The kids showed off their balloon hats in our traditional "Parade of Hats" to kick-off our Variety Show Saturday evening, which was a fantastic, fun-filled event too! The bonding between the kids, peers, and siblings was very special and created many cherished memories for all.
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Thank You To Our Photographers!
When a huge, inspiring event like the MTM-CNM Family Conference takes place, we want to do our best to preserve as many of these wonderful memories as we can!
We were deeply thankful to have two talented photographers present at our event to photograph these special moments for us: Levi Gershkowitz of
Living in the Light of Rare Diseases and Sergio Vazquez, one of our great MTM dads!
Thank you for sharing your gifts with us, Levi and Sergio! We look forward to sharing the moments you've creatively captured with our families and will be sharing more images through our future MTM-CNM Family Connection newsletters, website, and our social media pages. Including our iconic conference group photo for 2015 still to come!
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Family to Family Connections!
During the conference closing program, our team encouraged everyone to "pick up your oars and row together!" As we have said, the 2015 conference may have concluded, but there is still much work to be done - and the connections will continue!
We are creating a new program, called Family to Family Connections, to help individuals and families affected by MTM and CNM connect to a person or group of people in their state so that they can gain information about state-specific resources and also encourage local get-togethers--two years is just too long to wait when there are friends nearby!
If you would like to volunteer as a "point person" of contact and resources in your state, please email us at
[email protected] with the subject heading "Family to Family."
We're very excited about the responses that we have already received and look forward to hearing from more of you!
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The Traveling Turtle Wants to Visit YOU!
One fun way to stay in touch is with our new "Traveling Turtle" who was hatched on July 26 2015 at the Hilton Garden Inn Chicago-O'Hare. This turtle's mission is to travel the world, visiting members of our MTM-CNM commun
ity, bringing us all closer together in spirit though we may be far apart geographically.
But first - we need your help! This Turtle needs a name! Some ideas that have been discussed in our Facebook group. Some names that have been so far are: Kulvir, Speedypants, Hopey, Magellan, Tory the Traveling Turtle of Togetherness, Timmy, Tina, Katoto, Tutella, Hope, Courage, Strength, Ajax, Baldwin, Myo, Yurtle, and Toby. Join the discussion, or email your name ideas now to us at [email protected].
In a few days, we will compile the top suggestions and hold a final vote. Then the Turtle can officially get its passport and hit the road! We can't wait to see what adventures our Turtle has in store!
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Thanks Again to Our Diamond Sponsors!
Courageous Patients.
Bold Effort.
www.respironics.com
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Thanks Also to Our Platinum Sponsors!
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| Targeting a strong and healthy future for our patients. |
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| Accelerating Clinical Development Through Innovation and Expertise |
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Remembering Allie
In memory of Allie Winn
Our MTM-CNM family lost a beautiful and brave soul recently when Allie Winn passed away. Allie attended the very first MTM-CNM Family Conference in Houston, TX with her mom Jenna in 2009. Allie's family will be holding a celebration of life for Allie tomorrow, August 14th, and Jenna has asked family & friends to wear the color purple--one of Allie's favorites-- in honor of Allie and of those with CNM.
Please join us in remembering Allie tomorrow. If you'd like, you may share thoughts, memories, or a picture of yourself wearing purple in our
MTM-CNM Family Conference group.
Allie's memory will always live strong in our community and our thoughts are with Jenna and their entire family at this difficult time.
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Thanks for support for Paley
Thank you to our MTM-CNM Family for all of your prayers and support this past week for Marie & David's youngest son, Paley Wood. Paley had an acute episode and coded at home, but thankfully was revived by Marie and swiftly taken to the hospital for intense care and recovery. We are very happy to share that Paley returned home on Tuesday and is recovering well surrounded by his beautiful family. Thank you for all of your prayers and positive thoughts for Paley, Marie, and the whole Wood family. They were greatly appreciated.
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Staying Connected:
Join us on Social Media
#mtmcnmfamily
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| Yours truly, |
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The MTM-CNM Family Conference Planning Team!
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| Shannon, Marie, Erin, & Mark |
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