Newswise — (ROCHESTER, Minnesota, Nov. 28, 2018) – It’s #GivingTuesday … a day to help change lives for the better. On this #GivingTuesday, the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Foundation is asking for your donation to help make a difference in the lives of people battling neuromuscular diseases.

#GivingTuesday is a global giving movement through which millions of people come together to support and champion the causes they believe in. The AANEM Foundation’s cause is providing research funding to find treatments and cures for patients living with muscle and nerve disorders. Within the past 2 years, the AANEM Foundation has provided significant funding to seven different scientific research projects (For more information, visit

It’s estimated that more than a million people in the United States are affected by some form of a neuromuscular (NM) disease; about 40 percent are under the age of 18. NM diseases are acquired or inherited conditions that affect some part of the NM system such as:

  • The muscles
  • The peripheral motor nerves (in arms, legs, neck and face)
  • The NM junction where the nerves and muscles meet
  • The muscle-controlling nerve cells (motor neurons) in the spinal cord

AANEM recently shared stories of a few patients fighting rare NM diseases. Bernadette Scarduzio, a woman who has been living with Charcot-Marie-Tooth (CMT) disease since 1987, has had 28 operations because of this devastating disease (on her legs, feet, hands, and hips). CMT is a degenerative disease that slowly causes deterioration of the nerves and muscles over time. CMT affects an estimated 1 in 2,500 people in the US and 2.6 million people worldwide, although experts believe the number could be much higher. Most often it is passed down from generation to generation.  

Living with CMT is not easy. However, Bernadette believes she has CMT for a purpose – to enhance awareness of the disease – and her main goal is to find a cure. Bernadette is hopeful that people will donate to help all those living with CMT.    “We have made some really big breakthroughs in clinical trials with a drug hopefully coming out next year for CMT type 1A. But there are over 100 types of CMT. Further research is necessary and we need funding.”

Berndette’s full story is available on the AANEM website at  


AANEM also recently shared the story of Beck Cammarata, a 7-year-old living with Duchenne muscular dystrophy (DMD). Beck plays Cops and Robbers at recess with his friends, loves cars, and as many kids do, fights with his older sisters. But Beck has also endured much more than most kids his age as a child living with DMD.

DMD is a rare disease; fewer than 200,000 cases are reported in the US each year. It is caused by lack of a functional dystrophin protein, which helps keep muscle cells intact. Patients with progressive muscle disorders experience symptoms in early childhood and some lose the ability to walk as early as age 10. These patients, mostly boys, experience life-threatening heart and lung complications in their late teens and twenties.


Beck’s family is well aware that having DMD means that Beck’s internal organs could begin failing at any time. “We’re definitely prepping for it. It’s very common and comes with the disease. We just don’t know when it might happen,” said Brandi, Beck’s mom. Every doctor’s visit involving a bone density scan or cardiology testing gives Beck’s family a shot of anxiety. His condition could change at any time.


Beck’s whole family dreams that one day they’ll find a cure for him.

 “We really need people to donate to research to continue funding clinical trials. We need a cure,” said Brandi. “I want nothing more than to see my son beat DMD. I know so many other families feel the same way. We’re fighting to make that happen.” Beck’s full story is available on the AANEM website at,-7-Year-Old-Living-with-Duchen.   

Make a Donation this #GivingTuesdayWith your help, the AANEM Foundation can fund research that will improve Bernadette’s life, Beck’s life, and the lives of other patients with NM diseases. Together we can support researchers that are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today. Visit

About the AANEM Foundation

Based in Rochester, Minnesota, the mission of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Foundation is to fund research in neuromuscular (NM) and electrodiagnostic (EDX) medicine in order to find treatments and cures for patients living with muscle and nerve disorders.

For more information about the AANEM Foundation, visit


Based in Rochester, Minnesota, the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is the premier nonprofit membership association dedicated to the advancement of NM, musculoskeletal and EDX medicine. The organization and its members work to improve the quality of patient care and advance the science of NM diseases and EDX medicine by serving physicians and allied health professionals who care for those with muscle and nerve disorders.

For more information about AANEM, visit or find us on Facebook, Twitter, LinkedIn and YouTube.

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Media Contact: Gretchen Williamson  

AANEM Communications & Membership Senior Coordinator  


[email protected]