Welcome Dr. Katie Bever and Allison Rosenberg, RN, DNP

We welcome Dr. Katherine (Katie) Bever and Ms. Allison Rosenberg. Katie (on the left) is a board-eligible internist joining us for the year as the “amyloid doctor”, replacing Dr. Julie Fu, who has left us to pursue further training in hematology-oncology; we wish her well! Dr. Bever is also interested in going into hematology-oncology, after […]

Anne Alllaire Art Exhibit

Talented artist Anne Gable Allaire, a 17 year AL amyloidosis survivor, has an upcoming one woman show at the Maine State Capitol in Augusta on view now through June 9, 2014. Anne is a Master Pastelist and member of the Pastel Society of America. Her work can be previewed on their website or seen  at […]

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 […]