From left to right: Alex Richmond, Don Reed, Judy Roberson

There’s an old Bob Marley song (well, let’s face it, he died in 1981 so there aren’t going to be any new ones) that has a chorus that goes: “Get up, stand up, stand up for your rights. Get up, stand up, don’t give up the fight”. That seemed to be both the motivation and rallying cry for Patient Advocates at a panel discussion I moderated at the World Stem Cell Summit in San Diego.

The title of the talk was the impact that Patient Advocates and patient organizations have had on the field of regenerative medicine.

Judy Roberson, a tireless champion for research on Huntington’s Disease, had a list of items that every person wanting to became patient advocate needed to know. First on the list was Show Up. She said everything springs from that. You can have the best intentions in the world, you can be a great organizer, you can have brilliant ideas, but if you don’t show up, none of that counts for anything.

Rule number two, Speak Up – don’t be afraid to ask. Judy pointed out that asking doesn’t hurt and the worst that can happen is that the person says no and you aren’t any worse off than you already were. And maybe, just maybe, they’ll say yes. And when that happens, well, then anything is possible, including an almost $19 million Disease Team award to fund research into Huntington’s.

Alex Richmond, the Executive Director of the CNS (Children’s Neurobiological Solutions) Foundation, says gather as much support as you can to help you. He says there are many diseases that affect small numbers of patients so people may feel that they can’t have an impact on their own, so Alex says they can find that strength by collaborating with like-minded organizations, scientists, family members, physicians and others. They may not all be fighting for the same specific disease, but their ultimate goal is the same – in his case to find treatments and cures for all children with brain disorders

Don Reed is another great champion and leader in the patient advocate movement. Don got involved after his son Roman was paralyzed in a college football accident– by the way Roman was given the Inspiration Award by the organizers of the World Stem Cell Summit for his remarkable work in helping raise more than $100 million for stem cell research. Don quoted Hamlet’s famous soliloquy, saying this best captures his feeling about the role of the advocate:

To be, or not to be, that is the question: Whether ’tis Nobler in the mind to suffer The Slings and Arrows of outrageous Fortune, Or to take Arms against a Sea of troubles, And by opposing end them

Don said the answer is simple: to be. Take Arms against that Sea of Troubles, push, promote, agitate, advocate for stem cell research, because that is the only way we will end these problems and come up with treatments for so many diseases.

Kevin McCormack