Connect with Us
|
|
||
| News & Media | ||
| Neuroscientists at UB’s Hunter James Kelly Research Institute Show How Turning Down Synthesis of a Protein Improves Nerve, Muscle Function in Common Neuropathy | ||
|
And while CMT is the focus of this particular research, the work is helping scientists at the Hunter James Kelly Research Institute enrich their understanding of myelin disorders in general. “What we learn in one disease, such as CMT, may inform how we think about toxins for others, such as Krabbe’s,” said Dr. LawrenceWrabetz, Director of the Hunter James Kelly Research Institute. |
||
|
“We’d like to build a foundation and answer basic questions about where and when toxicity in diseases begin.”
Learn more by reading the full article from UB News and visitng the HJK Research Institute section of our website. |
||
| Rosicki, Rosicki & Associates, PC., hosts Annual Gala to benefit Krabbe, Leukodystrophies and Newborn Screening | ||
 New York Governor, Governor Andrew Cuomo approved funding for Aidan’s
Law, adding Adrenoleukodystrophy (ALD) to New York’s Newborn Screening
panel. Named for Aidan Seeger (7/21/04 – 4/29/12), who suffered from the
disease, the law will make the New York the first state to mandate
screening for ALD.
ALD is an inherited metabolic disorder, which affects the nervous system and is usually fatal if not treated before symptoms appear. This devastating disease has an estimated incidence of 1 in 17,000 in boys. If untreated, those affected lose all voluntary muscle function, as well as vision and hearing, and eventually die. “I am so proud that the state of New York is continuing to lead the way in screening for Leukodystrophies,” stated Jim Kelly, Co-Founder of Hunter’s Hope. “I hope other states will follow New York’s example and begin screening for Krabbe, ALD and more. All kids deserve the chance at a healthy life, and it is up to us, the parents, doctors, lawmakers, whomever, to give that to them.”Learn more by reading the press release and visiting the Newborn Screening Take Action section of our website. |
||
|
Rosicki, Rosicki & Associates, PC., hosts Annual Gala to benefit Krabbe, Leukodystrophies and Newborn Screening |
||
 Rosicki, Rosicki & Associates,
P.C., will hosted its ninth annual gala to benefit the Hunter’s Hope Foundation
on Friday, March 8, 2013 at the Hunter James Kelly Research Institute (HJKRI) at the New York
Center of Excellence in Bioinformatics and Life Sciences.
Funds raised will assist the Foundation’s efforts to find new treatments and a cure for Krabbe and other Leukodystrophies, provide support to families and children affected by these devastating diseases and advocate for expanded universal newborn screening. The HJKRI helps to accomplish the first part of the Foundation’s efforts as over thirty researchers and scientists currently study myelin and its diseases at the Institute. Breakthroughs in this arena also have the potential to impact those within the Multiple Sclerosis and stroke communities. |
||
|
Media Guest Book - Register here if you are a member of the media and would like to be added to our press release distribution list. |
||
