Ed Sheeran’s Instagram Reminds the World of Melody’s Fight with Rett Syndrome
If you look on Ed Sheeran's Instagram you will see a recent photo of him and a beautiful eleven-year-old fan. But this is not just any fan-- the picture holds…
Investigational Rett Syndrome Therapy Gets Orphan Drug Designation
According to a story from BioSpace, the biopharmaceutical company AMO Pharma Limited recently announced that the U.S. Food and Drug Administration (FDA) had decided to grant Orphan Drug designation for…
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Newron Prepares New Clinical Trial for Rett Syndrome Treatment
Newron Pharmaceuticals S.p.A (Newron) is a biopharmaceutical company specializing in developing inventive therapeutic options. They focus primarily on conditions related to the nervous system. According to bioportfolio.com, Newron announced on…
Meet the Mom Fundraising for her Two Adult Children with Rare Diseases
I am a caregiver mom to my two special needs, young adult, rare disease kids. I am also a recent widow; previously, I was a caregiver wife to my very…
Could Thought Reading Technology Give A Voice to Nonverbal Patients?
Darwin Ecosystem typically is a name heard in analytic circles. The company specializes in machine-learning and pattern recognition. Now, the company is using their artificial intelligence know-how to help give…
Therapy Dogs Bring Relief To Hospital Patients In West Bloomfield
Henry Ford West Bloomfield Hospital is all about their furry friends, AKA their beloved canines, reports Detroit News. If you aren't greeted instantly by Hope and Benson, two of the…
A Pre-Clinical Study on Rett Syndrome Has Produced Promising Results
A pre-clinical study of a treatment for Rett syndrome has produced encouraging results, and it is hoped that this will lead to further research. The full story can be read…
Anavex Plans to Trial its Treatment For Parkinson’s Disease Dementia, and Researchers are Hopeful that it Could Also Benefit Other Diseases
A drug called Anavex 2-73 being developed to treat Parkinson’s disease dementia is planned to undergo testing in a Phase 2 clinical trial, reports Globe Newswire. Parkinson’s disease is a…
Mother of Young Girl with Rett Syndrome Takes a Stand on Twitter Bullying
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
NBC’s Richard Engel Shares His Son’s Diagnosis of Rett Syndrome
NBCNews Chief Foreign Correspondent, Richard Engel, opened up about one of the hardest phone calls he ever had to receive-- the call where he received the diagnosis of Rett syndrome for…
New Research Inches Closer to Treatment For 8-Year-Old Girl And All Rett Syndrome Patients
Rett syndrome might limit 8-year-old Laurel Cooper's ability to speak and do every day tasks, but it doesn't hold back her spunky, sassy attitude, reports University of Wisconsin-Madison News. She will…
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A New Treatment For Rett Syndrome Is About To Start Trials
According to a story from PR Newswire, the pharmaceutical company Biohaven announced that they have received clearance from the Food and Drug Administration (FDA) to begin work on its clinical trials…
AveXis, Gene Therapy Development Company, Expands Program
The gene therapy development company, AveXis, Incorporation, just announced that they will be expanding their clinical trial development program for the potential gene therapy treatment: AVXS-101, reported Globe News Wire.…
Parents Sue Hospital and Social Services Over Treatment Of Their 11-Year-Old Daughter with Rett Syndrome
The Driscoll family is left devastated and shocked after receiving a letter from social services that states the government could be taking their daughter, who is suffering from Rett syndrome,…
We’re Already on the Way to Gene Therapy for Rett Syndrome
Rett syndrome is a severe, genetic neurological disorder, which primarily affects girls. While it was once thought to be a form of autism, it's now understood as its own condition.…
Small Molecule Drug Offers Hope for Rett Syndrome Patients
Recent research has found new discoveries for those with neurodevelopmental disorders like Rett Syndrome. These new findings offer hope that those with mental disabilities like autism do not necessarily have…