AANEM Foundation News Express Related to Patient Stories

AANEM Foundation News Express

Orlando Houston: “I May Have ALS, but ALS Doesn’t Have Me!”

    2/8/2019
Orlando Houston, recently diagnosed with ALS in October 2018, believes that researchers will find a cure for ALS someday, but to find it, continued scientific research is needed. 

“The cure is out there,” Orlando said. “We have people willing to do the research, we just need people willing to help support this research. As long as we continue to seek, we will soon find the missing key!” 


Holly’s Journey: From Guillain-Barré Syndrome to Happily Ever After

    11/16/2018
When doctors told Holly she had Guillain-Barré syndrome (GBS), her initial thought was “Whatever this was – because I had never heard of GBS before – it would be mild and I would get through it. I was naïve. I had no idea what was about to come.” 

The impact of GBS on Holly was severe and being that it occurred shortly after the birth of her first baby, it was a very traumatic experience for her. 

Holly is fortunate she made a complete recovery and is using her experience to help others on their GBS journey. 


Taylor’s Many Blessings in Life: Faith, Family, Friends, Hockey, and Myasthenia Gravis

    5/31/2018
Take a moment to read Taylor’s story about a college student and Division I athlete recently diagnosed with myasthenia gravis (MG). While her MG battle began from rock bottom, Taylor says it has been a blessing in her life: “It has made me a better person, given me a new perspective on life, and opened so many doors for me to help and meet new people.”

Meet Kristin: Mother, Social Worker, and Charcot-Marie-Tooth Survivor

    3/23/2018
At age 23, Kristin's medical problems stopped her in her tracks and totally disabled her.
 
“My bones had deteriorated so much that I could barely walk … My muscles had atrophied so fast. The doctors were stumped and I was so very depressed. My life as I had known it was over.” 
 
Kristin explains that it took her a “few years and a few tears” to get an actual diagnosis.

“I saw a few different neurologists who ran testing, but it wasn’t until I had my son at age 31, that my neurologist finally figured out the diagnosis. I had Charcot-Marie-Tooth Type 4C."

Meet James Higginson: Award-Winning Artist and Guillain-Barré Syndrome Survivor

    2/8/2018
Photographer/director/artist, James Higginson, has accomplished much in his 60 years. Among his numerous accolades, he has received an Emmy Award for his set decoration work on the 1980’s show “Pee-Wee’s Playhouse,” international film festival awards for his 2012 feature length experimental art film, “Willful Blindness,” and has completed a new documentary, “Devout.” James was hoping to release his documentary in 2017, but 6 months ago, while working on house renovations, his hands and feet went numb. His diagnosis: Guillain-Barré Syndrome. 

James Ramirez’s First Grade Life: Hot Wheels, Rock Music, and Duchenne Muscular Dystrophy

    12/1/2017
Six-year-old James Ramirez enjoys watching “The Magic School Bus” and dinosaur movies, playing with his Hot Wheels cars, and listening to rock music. His mother, Samantha, describes him as a “little goofball who is full of energy.”

While he may be energetic, as much as he tries, James just cannot keep up with other kids his age because his muscles don’t work as well as theirs.

The official diagnosis of Duchenne muscular dystrophy (DMD) came on September 6, 2016 – on James’ first day of kindergarten.

Moving from Family Secrecy to Public Advocacy: Bernadette Scarduzio and Her Life with Charcot-Marie-Tooth

    11/8/2017
A disease that was once a family secret has now become Bernadette Scarduzio’s greatest passion – Charcot-Marie-Tooth (CMT).

Meet Beck Cammarata, 7-Year-Old Living with Duchenne Muscular Dystrophy

    10/9/2017

Help patients like Beck by making a donation today!

In many ways, Beck Cammarata is like most 7-year-olds. He 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 Duchenne muscular dystrophy (DMD).