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Little-known diseases worthy of coverage, too

On May 18, a group of 34 people gathered on a bike path for the Care Walk to benefit the Cooley’s Anemia Foundation. We wore matching T-shirts. Our thoughts and hopes were equally matched. Cooley’s, or Thalassemia, is a rare, genetic, life-threatening blood disorder that in its severest form affects about 1,000 people in the United States, requiring the patient to receive lifelong blood transfusions and face other challenging health issues.

I’m the mom of someone with the severest form, so this little-known disease is a big issue for me. While I understand there is bigger news, bigger fundraisers, even prom weekend – all important to those involved – I am disappointed by the lack of empathy, compassion and interest of our local media. I believe we were ignored by every media outlet that I contacted because of our “smallness.” One local TV station did give us a 15-second public service announcement.

How can we find supporters and work toward a cure if we can’t get the word out to the community? Our little-known cause is just as big, important and worthy as those supported by TV stations, corporate businesses, banks and hospitals. Our children deserve more. We deserve the opportunity to build on the hope we have for their future.

Joycelyn Bila

Team Captain

Care Walk Organizer

Amherst