MISSING LINK IN ALS CURE: FUNDS
MGH docs and patients stay hopeful
When Mike Ballon graduated from Oberlin in 1978, many of his friends started down the traditional paths — law school and business.
As has continued to be his habit during his 61 years, Ballon chose his own direction, taking various food industry jobs in Manhattan before heading up to the Berkshires with a few truckloads of equipment, tables and chairs to open a restaurant in Great Barrington.
For almost 30 years, his Castle Street Cafe was a fixture in the Berkshires’ community life, a popular “home” for the mixture of locals, artsy types, New York refugees and marchers-to-theirown-drummers that make western Massachusetts special. Ballon became a major civic force for good, continually supplying food, money and space for nonprofits and social service organizations of every variety. “People would walk in the door with a sheepish look on their faces, and I just knew that they wanted a gift certificate for a local charity,” Ballon remembers. “I didn’t want them to feel sheepish. I would just say ‘yes.’ ”
Ballon used his restaurant to raise money for the victims of the Haiti earthquake and the New Orleans hurricane, and to provide food directly to women’s shelters and food pantries. “It was just a decent thing to do,” he says.
Last spring, Ballon noticed he was having difficulty walking up stairs. By the summer it had become even more difficult. Several months ago, after rounds of testing, he was informed that he appeared to have amyotrophic lateral sclerosis, or ALS, a dreaded motor neuron disease that has no cure.
Since then he has tapped into a nationwide family of ALS patients and their loved ones, who share information about clinical trials, fighting the insurance companies that can make paying for medical care all but impossible, finding interdisciplinary care centers that provide onestop shopping for the suite of services ALS patients need — and who provide emotional support for one another as they battle to extend their life expectancy and preserve their quality of life. “ALS patients are highly motivated, to say the least,” Ballon says wryly.
Ballon is enrolled in a clinical trial at Massachusetts General Hospital, and spends a lot of time in Boston, home to a robust cluster of impassioned scientists and physicians racing to develop treatments for ALS and convinced that if funding for ALS research can be substantially increased — and accelerated — treatments, and even a cure, can be found.
“ALS is not incurable, only underfunded” is the motto of the ALS Therapy Development Institute, a nonprofit biotech based in Cambridge with 32 full-time scientists entirely focused on ALS research. It is funded solely by private donations, as the institute’s Rob Goldstein puts it, “by checks from golf tournaments.”
Goldstein and others are both aghast at the paucity of funding for ALS and excited about how much has been achieved with so little. Only $100 million a year goes to ALS research apart from what pharmaceutical companies spend internally. This, Goldstein notes, is about half of what is being spent on a new condo complex near where he lives. And yet even with this relatively small amount of money, Goldstein says, huge strides have been made. Fifteen years ago, he says, there was one ALS drug trial. Now there are 40. Each provides hope.
Ballon’s physician, Merit Cudkowicz, concurs. “I think of this as a very hopeful time for ALS,” says the chief of neurology at MGH, pointing to the extraordinary people at ALS TDI and ALS One, a Massachusetts foundation that raises money for ALS research. “It’s hard to know how much money is required to cure a disease. But all the pieces are there. What is needed is the funding.”
In the meantime, courageous ALS patients like Mike Ballon and their families battle on, fighting this disease that has cursed them, supporting one another and hoping that the devoted professionals on a mission to develop treatments for ALS receive what they need to help them win their race against time.