Fran Delaney Fund for ALS Research Reaches $1 Million Mark at Annual Golf Tournament.

Business Editors

NEWTON, Mass.--(BUSINESS WIRE)--June 10, 2003

Funds to Benefit the ALS Therapy Development Foundation, Massachusetts General Hospital 

Organizers of the Fran Delaney Fund announced today that their volunteer based grassroots fundraising effort for ALS research has reached its $1 million goal. The 3rd Annual DIGITAL Alumni Golf Tournament to benefit the Fran Delaney Fund raised more than $85,000 yesterday, bringing the Fund's effort to its $1 million goal in less than three years. The goal was reached entirely on a local level with the help of more than 400 volunteers and over 3,000 contributors supporting the Fran Delaney Fund.

"In reaching this milestone, we prove that patient activism combined with the passion and commitment of caring friends and family can make a difference in the fight against ALS. Our volunteer effort offers hope to the 30,000 patients and families who have been devastated by ALS," said Fran Delaney, the ALS patient and former Compaq Computer Vice President for whom the fund raising effort is named. "We hope the funds that the Fran Delaney Fund has invested in research will help soon put an end to ALS and will inspire other patient families to take similar action. No family should have to live with the horror of ALS."

The Fran Delaney Fund is a family initiated research fund and is specifically directed toward supporting the work of research laboratories working toward a cure for ALS. The Fund is run on an all-volunteer basis, and raises money through local fundraising efforts. The Fran Delaney Fund Team has planned, organized and managed more than 32 awareness and fundraising events that have included raffles at Boston Bruins hockey games, Casino Nights, and the DIGITAL Alumni Golf Tournament. All proceeds from the golf tournament will benefit the Day Neuromuscular Laboratory and ALS Clinic at Massachusetts General Hospital and the ALS Therapy Development Foundation.

"What the Fran Delaney Fund has done in such a short period of time is just unbelievable," said James Heywood, Founding Director of the ALS Therapy Development Foundation, a nonprofit biotechnology company dedicated to discovering and developing treatments for ALS. "The support of the Fund has allowed our laboratory to identify potential new drugs to treat ALS, and to move these drugs closer to the clinic in collaboration with other organizations that are also searching for a treatment and a cure for this devastating disease."

Before his diagnosis, Fran was a successful Vice President at Compaq Computer, a father of three and an avid golfer at the peak of his game. When Fran was diagnosed with ALS, he and his family were stunned to learn that the government and large pharmaceutical firms invested few resources in developing therapies to arrest or cure ALS. With support from friends, they established the Fran Delaney Fund in March 2001 with the goal of raising awareness and $1 million for ALS research. Fran Delaney's efforts have served as a model to hundreds of other ALS families that recognize that patient activism is a requirement for a cure and that they, too, can make a difference. Although his disease is progressing, Fran continues to be deeply involved in the leadership, management and direction of the fund. To join the fight against ALS and contribute to the Fran Delaney Fund visit the website at www.frandelaney.com.

About ALS

Amyotrophic lateral sclerosis (ALS) is a fatal neurological disorder that affects thousands of Americans each year, causing paralysis through the progressive death of motor neurons. Thirty thousand Americans have ALS, and 250,000 Americans alive today will eventually die from the disease. Although ALS mainly affects patients over fifty, it can strike at any age. It also strikes without warning - nine out of ten patients have no family history of the disease. Most patients die within four years of diagnosis. There currently is no known cure. Since ALS is characterized as an "orphan disease," a rare disease that affects fewer than 200,000 people in the U.S., research relies largely on donations by individuals, foundations and corporations.

About ALS-TDF 

Founded in 1999, the ALS Therapy Development Foundation is dedicated to discovering and developing treatments for ALS. The non-profit biotechnology company has raised $11 million for ALS research and now runs the largest centralized drug discovery program in ALS, has collaborated with 28 for-profit companies and academic researchers to perform advanced investigations of more than 50 near-patient drugs in its laboratories. Since the launch of its in vivo drug-screening program in 2001, ALS-TDF has discovered two novel therapeutic targets and identified four lead drug candidates. In 2003, ALS-TDF will sponsor clinical trials at leading ALS clinics to help bring the most promising drug candidates closer to FDA approval. To learn more, visit the ALS-TDF website at www.als.net or call [phone].

ALS Research at the Massachusetts General Hospital

An active ALS research program has existed at the Massachusetts General Hospital since 1980. This consists of three components under the direction of Drs. Robert Brown and Merit Cudkowicz: (1) laboratory investigations of the basic causes of ALS and novel approaches to discovering ALS treatments; (2) a Clinical Trials Unit; and (3) a large ALS clinic that sits at the interface between the laboratory and the clinical trials. The laboratory studies encompass several research directions, including ALS genetics. The lab has been involved in the discovery of three different ALS genes and has developed animal and Petri dish models of ALS for treatment discovery using insights from the ALS genetics. The Clinical Trials Unit has organized several multi-center studies of ALS drugs, as well as longitudinal analyses of ALS epidemiology and risk factors. With the Clinical Trials Unit, a multi-center consortium of ALS investigators has been organized to expedite drug testing (Northeast ALS Consortium). The ALS clinic offers full service care to clients and families with ALS, and serves as a focal point for treatment-oriented clinical investigations.