Category Archives: STAR

STAR bus available for those with disabilities

Where I live we are fortunate to have the STAR bus (Special Transit Available by Request), a Para-transit service for people with disabilities who are unable to use the regular bus. The STAR bus is generally smaller than a regular … Continue reading

Posted in Charcot-Marie-Tooth disease, neuromuscular disease, peripheral neuropathy, STAR, transportationfor disabled | 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

Do you start your day by falling on your face?

How do you start your day? I begin most days by getting out of bed, taking a few steps and falling splat on my face. Then I crawl over to the dresser and struggle to pull myself up off the floor with my weakened, muscle wasted arms.
After 47 years of wondering what’s wrong with me- why do I keep tripping over my own feet and spraining my ankles? Why can’t I get up out of a chair without my husband grabbing me by my belt loop to pull me up? Why do I need to crawl up the stairs if there’s no hand rails? Why am I getting worse? Finally I have a diagnosis. I have CMT or Charcot-Marie-Tooth disease. Continue reading

Posted in AFO, Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, human clinical trials, leg braces, Neurologist, neuromuscular disease, neurotoxic drugs, peripheral neuropathy, personal stories, physical therapist, STAR, stem cell research | Tagged , , , , , , , , , , | 2 Comments

Profiles in CMT: Interview with Christine A. Hook

Christine A. Hook’s Interview with Melinda Lang

You recently received an award from the CMTA, tell us about your award and how you were nominated.

Yes, I recently received the National ‘I am a STAR’ award, for everything I have tried to do to raise awareness of CMT, and money for research…through the CMT blog, Grace Lines, I write, and the Art de Cure gallery I co-coordinate, which benefits the CMTA. My parents nominated me for the award, and I’m still shocked that the CMTA chose me. It’s a great honor! Continue reading

Posted in Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories, STAR | Tagged , , , , , , , | 6 Comments

Vote to Win a Share of $5 Million for CMT (Charcot-Marie-Tooth) disease

  The CMTA Needs Your Vote to Win a Share of $­5 Million Written by CMTA We need your vote to win a share of a $5 million grant from Chase Community Giving program. it only takes a second to … Continue reading

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

Royal Pains gives me a royal pain

Mom almost fainted and I nearly fell off the couch, when watching a recent episode of USA Network’s Royal Pains, a comedy television series about a concierge doctor-on- demand working in the Hamptons. When attempting to diagnose Divya’s new boyfriend’s arm numbness and paralysis, Dr. Jeremiah said he may have CMT, “which is almost always fatal.” That’s NOT true. Continue reading

Posted in Charcot-Marie-Tooth disease, CMTA, Health CMT, MS, Neurologist, neuromuscular disease, peripheral neuropathy, STAR | Tagged , , , , , , | 6 Comments

Have Fun with the CMTA’s Letter Campaign

Spread the word about CMT by participating in our letter campaign. This effort allows you to share your personal CMT story to “The Doctors” television show. Plus, you can encourage the recipients of your letter to make a secure on-line donation to the CMTA’s Strategy to Accelerate Research™ (STAR™) Initiative in your name. Continue reading

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

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

STAR’s Transformation Project

For the first time ever, live adult human stem cells will be used to search for effective compounds to treat CMT. The CMTA has embarked on this groundbreaking STAR research project to rapidly accelerate the drug development process in search of a successful treatment to slow, stop or potentially reverse the progression of CMT Continue reading

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