Tag Archives: Rare disease

3rd Annual CYCLE 4 CMT

My good friend, Amy, has convinced me to get back on a bike again by joining her in participating in the 3rd annual CYCLE 4 CMT on August 28. Last year, I went to this event to support Amy, raise some money for CMT, and enjoy the party. Continue reading

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Posted in Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, fundraiser, Fundraising, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , , , , , , | Leave a comment

Flying Porta-Potties

Throughout my life I have found that I’ve wasted way too much time worrying about a lot of things that never happen. Now it seems that what I should have been worrying about, is getting done in by a flying Porta Potty. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, flying Porta-Potty, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , | Leave a comment

CMT Awareness Month Challenge

We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.
I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression. Continue reading

Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

September 2013 is CMT Awareness Month! What Will You Do to Spread Awareness?

September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon: Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, Neurologist, neuromuscular disease, peripheral neuropathy, STAR | Tagged , , , , , , , , , , , , , | Leave a comment

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!
http://www.congressweb.com
The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address specific issues related to rare disease drug development as required by FDASIA. This is unacceptable! Continue reading

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2013 RARE Champion of Hope Community Nominated Awards

The Tribute to Champions of Hope Gala is being held in Newport Beach, CA on September 21st and the Global Genes Project is looking for RARE Champions to be recognized for four special awards nominated by you! Nominations are being accepted April 1st through May 15th. Continue reading

Posted in Charcot-Marie-Tooth disease, Global Genes Project, Health CMT, neuromuscular disease, peripheral neuropathy, RARE Champion of Hope Community Awards, Rare disease day | Tagged , , , , , , , , , , , , | Leave a comment

A Race For The Brace by guest blogger Amy

As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, fundraiser, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , , | 6 Comments

Budget Control Act of 2011 could have a devastating effect on research

Under the Budget Control Act of 2011, federal programs face an across-the-board funding cut of nearly 8 percent in January 2013, if Congress hasn’t reached agreement on a budget deficit reduction plan. Continue reading

Posted in ALS, Alzheimer's, Charcot-Marie-Tooth disease, Health CMT, human clinical trials, MS, neuromuscular disease, Parkinson's, peripheral neuropathy, Rare disease day, STAR, stem cell research | Tagged , , , , , , , , , , , , , | Leave a comment

Take Action For Rare Disease Day!

This will only take a few minutes to get your voice heard! Today, February 29, 2012, is Rare Disease Day.  I just took action to raise awareness in the United States about people with rare diseases! Please take a few … Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy, Rare disease day | Tagged , , , , , , , | 1 Comment

RARE DISEASE DAY IS FEBRUARY 29, 2012

Lundbeck has launched a campaign to raise funds for rare disease day. Simply click the ‘Raise Your Hand’ icon during February, and Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research. Continue reading

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