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From My Mother trailer
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From My Mother by Darcy Leech
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MDA Wichita 2016 Muscle Walk #whIiwalk by Darcy Leech
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My mother and brother both died with the same disease – myotonic muscular dystrophy. Myotonic muscular dystrophy is a rare, genetic, terminal and currently incurable disease. It affects about…
darcyleechblog.wordpress.com

Help me raise funds for the Muscular Dystrophy Association by paying towards my bail! http://www2.mda.org/site/TR/Lock-Up/LockUp2018-National…

I'm doing a little time for a lot of good! I'm a Jail Bird for the Muscular Dystrophy Association Lock-Up event and I need you to help pay my bail! Kids and adults in our community are living with muscular dystrophy, ALS and related muscle-debilitating diseases that take away everyday freedoms like walking, talking, hugging and even breathing. By donating to my bail, you can bring strength and hope to individuals and families in our community living with these life-threatening diseases. My mother and brother both had myotonic muscular dystrophy, and the MDA works to make life better for families like ours. Let's help them out.

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Posts

Myotonic Dystrophy Foundation Annual Conference 2017 reflection - see the wrap up of my trip!

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Darcy wants to go home with zero books, so please come get your free copy of From My Mother at the Myotonic Dystrophy Foundation Annual Conference. You can donate to the MDF instead of pay me if you'd like to send the $15 or so their way.

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Meeting Miles and Emma-Jayne Ashley from the UK!

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Sometimes life reminds us to appreciate the time we are given and to make the most of the moments we have. JUST landed in San Fran. Now I have to navigate to make it to the hotel.

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Morning at the Airport - Why am I going to the Myotonic Dystrophy Foundation's conference? Check them out at http://myotonic.org/

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Catching a plane in the morning for the Myotonic Dystrophy Foundation's Annual Conference in San Francisco - better get some sleep!

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Join us at Bethany College to earn from a Bethany '08 alumn on writing, social media, and marketing in the digital era.

APR27
Thu 2:30 PM CDTMabee Conference room in the Welcome Center

I turn 31 tomorrow. Want to help my birthday be meaningful? Consider donating to my Muscle Walk team with the Muscular Dystrophy Association to help families like mine!

http://www2.mda.org/site/TR…

MDA Muscle Walk - Together, we are uniting to bring strength, independence and life to kids and adults living with muscular dystrophy, ALS and related life-threatening diseases.
www2.mda.org

Scientists keep progressing on answers to Neuromuscular Disorders - FDA approved treatment for severe multiple sclerosis http://www.cnn.com/…/…/multiple-sclerosis-drug-fda-approved/

The US Food and Drug Administration approved the first treatment for a rare form of multiple sclerosis, a debilitating disorder in which the body's own immune system attacks the brain and spinal cord.
cnn.com

Updating the website with 2017 events. Get in touch if you'd like a book talk, presentation, church message for your group. I'd love to share the story of From My Mother with you and your friends!

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I was reflecting on the end of the year and compiling my taxes as an author. It made me wonder "was all the time worth it?" Then I read this review for the first time:

From My Mother - a beautiful tribute and a testimony of faith

ByMellynneeon December 12, 2016...
Format: Kindle Edition|Verified Purchase
I give this book 5 stars! I am a person living with Myotonic Muscular Dystrophy, Type 1. I read it from the perspective of Darcy's beautiful mother, which was very hard for me, at times. I was hit hard by Darcy's own feelings, the way she felt as a teen toward her mother. I see this is my own children, and now I understand more about how they feel living with me, living with MD. They don't always understand, and it breaks my heart knowing that they are dealing with this, too, as the survivors of this disease. There are several of my family members who also have MD, including one of my daughters, but I have 2 other daughters who are probably feeling a lot like Darcy did.
I want to thank you, Darcy, for taking the time, tears, and courage to write this memoir of your life. I feel blessed to have been able to share your memories with every page, and to pass this on to others. Your faith is inspiring!
Melanie L. O'Donnell

Yes. The time was all worth it....

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Great Writers, Right Here in Topeka

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Podcast with a friend, Leslie Krongold on a salute to caregivers featuring in part From My Mother http://glasshalffull.online/a-salute-to-caregivers/

A Salute to Caregivers http://traffic.libsyn.com/ghfonline/GHF_018_mixdown.mp3Podcast: Play in new window | DownloadSubscribe: iTunes | Android | RSS Loraine and Zen Darcy and her mother Cecelia in her happy place November is National Caregivers Month. This episodes includes conversations with three...
glasshalffull.online

Dr. Jeffery Statland from the KU Neuromuscular Clinic explaining Exondys 51 and other research pathways for Neuromuscular Diseases

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Dr. Jeffery Statland from the KU Neuromuscular Clinic explaining CRISPER and other research pathways for Neuromuscular Diseases

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