Editorial: Finding a cure with a cone

Published 12:10 am Sunday, August 23, 2015

If you drove by the West Innes Street Animal Hospital Saturday afternoon, you might have spotted Brandy Strickland (Downs), her family and friends in the parking lot selling ice cream.

Strickland was trying to raise money for research into treatment and a cure for a rare form of cancer she has had since at least 2011 — epitheliod hemangioendothelioma, or EHE. The disease is a vascular sarcoma affecting between 100 and 200 people each year in the United States.

Because the cancer is so rare, public funding for research is scarce, making the development of targeted therapies difficult. So it comes down to patients such as Strickland and the EHE Facebook community that has developed to do the fundraising for research on their own.

The Post told some of Strickland’s story Friday, and she says she hopes, above all, it shows how a few motivated people can move mountains, “and that even if you have something really rare, where there are so few answers, there is still something you can do to make things better.” Strickland’s fundraiser was a fund-raising laboratory of sorts. She planned to write a synopsis of how she put it all together, then share it as a possible model for other individuals to follow in the EHE community.

Her point: Not everybody can organize big golf tournaments or elaborate $100-a-plate dinners, but most people might be able to sell something like ice cream on a hot summer day. And everything little bit helps. Dr. Brian P. Rubin, the one oncologist in the world who has devoted himself to trying to find a cure for EHE, says grassroots funding has become vital to his laboratory.

For rare cancers, Rubin said in a recent published interview, “it is important for scientists to go directly to patients, patient groups and private foundations for research funding.” He said he links to EHE patients on their Facebook pages, and many email him — Strickland included — with questions about their disease, “and I am happy to help them.”

In turn, EHE patients provide Rubin with tissue whenever someone has, for example a liver resection or lung surgery. Strickland had a lesion in her scalp removed, and that tissue was sent to Rubin.

There’s quite a disparity between the  kind of research funding that can be raised through something such as last year’s Ice Bucket Challenge for Lou Gehrig’s Disease and the modest money raised by selling ice cream cones on the weekend.

But grassroots efforts of all sizes make an impact. Strickland believes Rubin when the oncologist says he thinks cures for EHE “are going to be around the corner.”

 

 

 

 

 

 

Comments