Category: Uncategorized

Repurposing Diflunisal for Familial Amyloid Polyneuropathy

December 25, 2013 An international consortium of investigators led by Amyloidosis Center Clinical Director Dr. John Berk have completed a randomized, placebo-controlled, phase III clinical trial of the non-steroidal anti-inflammatory drug diflunisal for patients with ATTR polyneuropathy, published today in the Journal of the American Medical Association. 130 participating patients received either diflunisal (250 mg […]

12th Annual Pop’s Run

The Nassau Wings 12th Annual “Pop’ s Run” charity motorcycle ride took place on Sunday, August 25, 2013 and raised over $5,800 to benefit the amyloidosis research at the Boston University School of Medicine. For more information, see their website at: http://www.popsrun.org

U.S. Senate Committee on Appropriations: Amyloidosis Language

Dear Friends, We are delighted to report that language on amyloidosis will be included in the U. S. Senate Committee on Appropriations in the fiscal year 2014 Labor HHS bill (see below). The House of Representatives Committee on Appropriations has included language on amyloidosis every year since 2008, but this is the first time language […]

Charity Raffle to Benefit Amyloidosis Research

Grand Prize: Free week vacation for up to six people in Sedona, Arizona at the luxurious Arroyo Roble Villa Resort (Week of October 13 – October 20, 2013). Up to $500 for airfare included. Tickets: $5.00 each / $20 for five tickets This fundraiser is sponsored by the Nassau Wings Motorcycle Club as part of […]

Fundraising Event: Kentucky Derby Festival Marathon

What:  Kentucky Derby Festival Marathon When:  Saturday, April 27th, 2013 Where: Louisville, KY Julie Hansell will be running the Kentucky Derby Festival Marathon on Saturday, April 27 to raise funds in honor of her father, Jim Hansell, who was diagnosed with Amyloidosis in January 2013. Donations can be made to Julie’s fundraising web page:  http://www.youcaring.com/other/26-2-Miles-for-Amyloidosis/42444

Upcoming Event: Bill Cunningham Memorial Ski Race & Raffle

What: Bill Cunningham Memorial Ski Race & Raffle When: Saturday, March 2, 2013 Where: Cannon Mountain (Franconia, NH) Bill Cunningham, former instructor, director, assistant & technical director of Cannon Mountain, died on May 22, 2007 of AL amyloidosis. For Cunningham, the illness was misdiagnosed for several years, until it was too late. The event is […]

5k Race to Raise Funds and Awareness for Amyloidosis Research

Savina, Sudha, and Ajay Kumar are raising funds for Amyloidosis research in support of their mother, Renu Kumar, who was diagnosed with Amyloidosis in February 2011.  In May 2011, Renu underwent stem cell transplantation at the Boston University Amyloid Treatment and Research Program under the care of Dr. Vaishali Sanchorawala.  Currently she is reported to have […]