Celebrating those who make a difference in the lives of people affected by rare blood cancers, myeloproliferative neoplasms (MPNs)

(BPT) - Dealing with any serious health problem can be an isolating experience. But it can be especially difficult for those living with a rare disease because information, resources and treatment options may be hard to find. Often, people who have rare diseases face challenges because their needs are not well understood.

Fortunately, there are unsung heroes among us to help these individuals cope and persevere. Even when the disease is one of the myeloproliferative neoplasms (MPNs), which is a group of closely related blood cancers that includes myelofibrosis, polycythemia vera and essential thrombocythemia, heroes can be found in the community.

Heroes such as Ashley Gould of San Francisco who left her position as an attorney and corporate officer to join a genomics and biotech company after her father, Harvey, was diagnosed with an MPN. Ashley then initiated a program to solicit 1,000 patients with MPNs so research could be done into the causes, effects and potential therapies of the diseases.

“Ashley gave me a draft of the post she was going to put on the company blog announcing this new program. And I sat there and just cried like a baby,” says Harvey. ”It was overwhelming what she was doing for her father. What she’s done is like a pebble being dropped in a lake and you see the calm waves emanating from this and eventually touching the shore.”

Or heroes like Elizabeth Browning of Ootelwah, Tennessee, who helps her husband Garry cope with his MPN. “Liz has such a caring attitude and is always trying to build me up and keep me going. She’s my strength,” says Garry. “I keep kidding her about it and asking for her autograph, but she hasn’t given it to me yet.”

Or MPN patient advocate Sarah Goldberger of Larchmont, New York, whose caring and counsel were lifelines for her long-time friend June Fox after she was diagnosed with an MPN disease. June wrote that, “Sarah took me from confusion and fear to clear thinking. [She gave me] a proactive role in my own care, and an optimism that I can deal with this.”

Ashley, Elizabeth, Sarah and four other individuals were honored last year in the inaugural MPN Heroes recognition program, sponsored by Incyte Corporation in collaboration with CURE Media Group, publishers of CURE magazine. The program recognizes individuals and organizations who have contributed to the MPN community by going above and beyond to make a real difference in their lives.

Since September is Blood Cancer Awareness month, there’s no better time to give these people the recognition they deserve. If you or someone you know has an MPN, you have until Sept. 12 to nominate your personal heroes at www.MPNHeroes.com. The site also features the inspiring stories and videos of the 2013 award recipients.

And if you’re looking for more information or to connect with others, visit the Voices of MPN website to find stories from patients and caregivers and links to disease information, educational programs and patient support groups. Get involved by using the “Raise Your Voice” Toolkit to help you plan an event within your community to help spread awareness of MPNs.