Enter your email address and select the appropriate button below to receive email notifications of updates to this site, or remove yourself from the list.

Join the Dejerine-Sottas message board and connect with others affected by Dejerine-Sottas!


Do you experience neuropathic pain from Dejerine-Sottas?

 Yes, often
 Yes, occasionally

View results

Melodies of My Life: A Disabled Girl’s Journey to Womanhood

December 27, 2005

Filed under: People

Melodies of My Life bookMelodies of My Life shares a no-holds-barred coming of age portrait of a young woman who refuses to let a chronic and debilitating illness define who she is or what she can achieve. At thirty-one, author Denedria Banks wears many hats—from daughter to sister to friend; from public speaker to single, fun-loving, independent Black woman; and from medical social worker to woman with a disability.
Each chapter samples the complex chords, harmonies, and disharmonies of her life’s passions. Banks explores various stages that impacted her search for self, including self-love and happiness. She ultimately discovers the true love that comes from putting yourself first, loving your every imperfection, and literally taking each day one step at a time.
In her own words, Denedria provides a rare glimpse into living with a debilitating disease. Doctors, nurses, physical and occupational therapists, students, people with disabilities and their loved ones, and those interested in the human condition will appreciate the journey of this young woman’s life—its darkest hours and brightest successes.

About the Author

Denedria Banks, MSW, ACSW, is a medical social worker, public speaker, and business owner. Although diagnosed at nine with Charcot-Marie-Tooth syndrome, a degenerative nerve disorder, she has beaten the odds and lives independently.

Treating Paraplegia With Gene Therapy

December 21, 2005

Filed under: Gene Therapy

Elena Rugarli and colleagues from the National Neurological Institute in Milan have used gene therapy to save sensory and skeletal muscle nerve fibers from degeneration in mice with hereditary spastic paraplegia (HSP).
This strategy, reported online on December 15 in advance of print publication in the January 2006 issue of the Journal of Clinical Investigation, holds promise for many other disorders characterized by nerve degeneration due to loss of function of a known gene. [Read more]

Snowflake talent brings flurry of interest

December 19, 2005

Filed under: People

Little flakes of paper fall to the board in Keith Bonnstetter’s lap, as he carves the folded white sheets with small, golden scissors. A tiny awl creates dots, eyes and lace-like holes. Minutes later, an angel begins to appear at the edge of the folded snowflake.
“If people send me pictures, I use them,” the Davenport resident said. He points to a snowflake with intricate pumpkins, pineapples, deer, rabbits, rocking horses, snowmen, leaves, butterflies and cardinals. Each represents a facet of a family.
First he draws the design, then copies it onto tracing paper. He folds thick white paper into fourths, then on an angle. “It has to be perfectly creased,” he said, reinforcing a fold with his thumbnail.
He transfers the design onto the folded sheets and then begins to cut. The scissors, he said, have to go in at a straight angle. “That’s what makes everything evenly sized.”
He started cutting snowflakes in college but did not do detailed ones until about five years ago.
“When I first started, I didn’t do personalized ones,” he said. “I did a lot of themes. So, I started that way. Then, somebody asked if I would do a graduation from high school, and they gave me a list of everything they did in high school.
“People like that, because it’s about them.”
Mr. Bonnstetter turned his hobby into a business as a way to help pay medical bills for his daughter, Claire. In 1999 he and his wife, Marsha, took then 4-year-old Claire to the Mayo Clinic because she was having trouble walking. Doctors there told the couple Claire had Dejerine-Sottas disease, a nerve disorder. She’s since improved through chiropractic care, a priest’s blessing and therapy.


Hereditary Neuropathy Foundation Fundraising Campaign 2005

December 16, 2005

Filed under: Fundraising

Approaching the end of 2005, we [the Hereditary Neuropathy Foundation] are launching today a Fundraising Campaign – ending January 31st, 2006 – to help with our initiatives in the new Year. We encourage you to support our cause once again in 2006. To entice even more generous donations, Robert Moore, co-founder of HNF, has offered to match each of this campaign’s donations dollar-for-dollar. (Remember, all donations are tax deductible for US-donors.)

New microscope allows scientists to track a functioning protein with atomic-level precision

December 14, 2005

Filed under: Understanding the Cause

A Stanford University research team has designed the first microscope sensitive enough to track the real-time motion of a single protein down to the level of its individual atoms. Writing in the Nov. 13 online issue of the journal Nature, the Stanford researchers explain how the new instrument allowed them to settle long-standing scientific debates about the way genes are copied from DNA—a biochemical process that’s essential to life. [Read more]

Congressional Committees Again Urge More Neuropathy Research

December 5, 2005

Filed under: Search for a Cure

For the second consecutive year, the appropriations committees of both houses of Congress have approved specific language written by The Neuropathy Association urging the National Institute of Neurological Disorders and Stroke (NINDS) to strengthen its research portfolio for peripheral neuropathy. The language is part of a report that will accompany legislation appropriating more than $1.5 billion for the agency’s FY2006 budget. [Read more]