jain-foundation.org
2016 LGMD Awareness Scholarship | Jain Foundation
http://www.jain-foundation.org/scholarship
Patient and Physician Resources. Clinical Studies and Trials. Automated LGMD Diagnostic Assistant (ALDA). Free Genetic Diagnosis for LGMDs. 2016 LGMD Awareness Scholarship. 2016 LGMD Awareness Scholarship. Category A: Merit-Based Scholarship ($3000, 2 winners). Entrants will be ranked based on their academic achievements, extracurricular activities, and leadership experience as well as their ability to teach their friends, family and acquaintances about LGMDs to help spread awareness. Facebook is a regis...
livingwithhibm.blogspot.com
Living with HIBM: September 2013
http://livingwithhibm.blogspot.com/2013_09_01_archive.html
What it's like to live with a progressive neuromuscular disease. Saturday, September 28, 2013. And the description he used to introduce me was "physician, patient, mom, speaker, patient advocate and blogger." The first four I could identify with, but advocate and blogger? I dedicate this blog post to Dr. Emil Kakkis and all of those miracle workers in their purple shirts at Ultragenyx. You know who you are. Subscribe to: Posts (Atom). My Coming Out Speech: 2008. Silver Lining: My NDF Gala Speech for 2009.
livingwithhibm.blogspot.com
Living with HIBM: August 2013
http://livingwithhibm.blogspot.com/2013_08_01_archive.html
What it's like to live with a progressive neuromuscular disease. Monday, August 26, 2013. I feel like it's enough already. I've risen to the challenge, I've tapped into my inner emotional resilience, I've gained invaluable coping tools and I've been given the gift of learning to truly appreciate what I have. Subscribe to: Posts (Atom). My Coming Out Speech: 2008. Silver Lining: My NDF Gala Speech for 2009. Losing Patience: My NDF Gala Speech for 2010. Enter your email address and follow my journey.
livingwithhibm.blogspot.com
Living with HIBM: Losing Patience: My NDF Gala Speech for 2010
http://livingwithhibm.blogspot.com/p/losing-patience-my-ndf-gala-speech-for.html
What it's like to live with a progressive neuromuscular disease. Losing Patience: My NDF Gala Speech for 2010. I have been living with HIBM for almost five years now. And one of the ways I’ve coped with living with a progressive neuromuscular disease has been to try to focus on all that I do. Have and on all of the ways in which I am. Life that I am talking about up here and that I. Am that person whom people will be talking about when they go home tonight, feeling so grateful they are not me. After the ...
livingwithhibm.blogspot.com
Living with HIBM: April 2014
http://livingwithhibm.blogspot.com/2014_04_01_archive.html
What it's like to live with a progressive neuromuscular disease. Friday, April 25, 2014. How do you manage with your kids? Do you find yourself staring at and admiring peoples's forearms and calf muscles? How much do you really share with your husband? Do you try to protect your family like I do? And then a couple of weeks ago, Harmony posted this on the HIBM Facebook page, ". I told him. Instead, per my usual, I shared with him. Slow and why I don't need. Now that my body lags so much farther behind my ...
livingwithhibm.blogspot.com
Living with HIBM: An Open Letter to Equinox
http://livingwithhibm.blogspot.com/2014/04/an-open-letter-to-equinox.html
What it's like to live with a progressive neuromuscular disease. Thursday, April 3, 2014. An Open Letter to Equinox. I actually live in a different. Body from all those other people. I didn't want to miss out on yet another thing because of my disease. And so I joined. This means that every time I pressed "up" and the wrong elevator opened (I think there are 8 in total), I had to wait to let that one close before pressing “up” again so I could hope for the right one to open. April 3, 2014 at 11:18 PM.
livingwithhibm.blogspot.com
Living with HIBM: Baby Steps
http://livingwithhibm.blogspot.com/2014/04/baby-steps.html
What it's like to live with a progressive neuromuscular disease. Friday, April 25, 2014. How do you manage with your kids? Do you find yourself staring at and admiring peoples's forearms and calf muscles? How much do you really share with your husband? Do you try to protect your family like I do? And then a couple of weeks ago, Harmony posted this on the HIBM Facebook page, ". I told him. Instead, per my usual, I shared with him. Slow and why I don't need. Now that my body lags so much farther behind my ...
genetestnow.com
Resources | GeneTestNow! The number 1 source for Jewish Genetic Disease Information
http://genetestnow.com/helpful-resources
National Organizations Promoting Genetic Testing for Jewish Disorders. Einstein Victor Center for the Prevention of Jewish Genetic Diseases http:/ www.victorcenters.org. Center for Jewish Genetics http:/ www.jewishgenetics.org. My Jewish Genetic Health http:/ www.myjewishgenetichealth.com. Jewish Genetic Disease Consortium http:/ www.jewishgeneticdiseases.org. SHORE (Sephardic Health Organization for Referral and Education) http:/ shoreforlife.org. JScreen http:/ www.jscreen.org. National Tay-Sachs and A...
livingwithhibm.blogspot.com
Living with HIBM: February 2014
http://livingwithhibm.blogspot.com/2014_02_01_archive.html
What it's like to live with a progressive neuromuscular disease. Friday, February 28, 2014. Of course, then there's the business of not being able to jump over puddles or step up onto a curb easily to avoid the small river that forms between the street and the side walk. But I will stop there. This is just a few minutes of the life of someone with a disability. And that's someone who is still relatively. So, where does that leave us? Where does that leave me? I can't go on. I go on.
taratalksgnemyopathy.blogspot.com
Tara Talks GNE Myopathy: Clinical Trials - Frequently Asked Questions, Founder Mutations, Request of Patients of Indian Origin,Patients' Day, And More
http://taratalksgnemyopathy.blogspot.com/2016/06/clinical-trials-frequently-asked.html
Tara Talks GNE Myopathy. This is a forum where I will discuss the challenges and insights I encounter on my journey in living with a progressively "weakening" disease called GNE Myopathy also known as Hereditary Inclusion Body Myopathy (HIBM). I will invite others to share their stories, tips, and comments. I will also discuss potential treatments, clinical trials, current research, and ways of supporting each other on this interesting and challenging journey. Saturday, June 11, 2016. Some of us may have...
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