MPN Hero Celia Miltz: Unending Compassion for MPN Patients

My name is Celia Miltz.I live in West Palm
Beach, Florida. We have three children. And our youngest daughter, Stephanie, lives
nearby in Wellington, Florida. We play golf. I do a lot of genealogy research. I take care of my daughter’s two small children
a lot. They’re the apple of our eye. Stephanie was sixteen, one day she was in
the school cafeteria and she collapsed. And we were referred to a hematologist/oncologist. The diagnosis came back that she had bone
marrow cancer called essential thrombocythemia. Stephanie: People won’t always understand
the difficult symptoms that you are dealing with. That’s probably one of the biggest challenges,
is that there’s a lot going on under the surface that people won’t see. Celia: I would say my daughter struggled most
with the isolation that she felt. Being a mom, I was always able to nurse her
back to health. I nursed her back through the chickenpox,
the flu, strep throat, tonsillectomies. But this I had no power. I couldn’t nurse her back. I couldn’t change the diagnosis, I couldn’t
take it away from her. So I got the inspiration from her to try and
give her hop and encouragement by raising money ourselves. And that’s how Friends of ET Research got
started. So I poured myself into the nonprofit. Raising public awareness was one of the biggest
stumbling blocks that we had. In 2005, Bob Rosen invited me to become a
board member of the MPN Research Foundation, which I happily accepted. And in this way, I would have a bigger say
on where the money that we were raising, how it would be spent and where it would be spent. But I never stopped fundraising. I believed in the community. I believed in the process that I’d started
and I wanted to carry it through. Our golf tournament, that’s what we decided
to do as a fundraiser. We were members of a gold club in Connecticut
at the time and all of our friends were golfers. And those friends became members of my board. We had great prizes. We had raffles, silent auctions, live auctions. We had some celebrity people in attendance. What I was seeking for my daughter, Stephanie,
was for her to find some sort of solace and comfort. She would speak at these events and everybody
would cry. And we just came all came together as a great
big family and she really needed that kind of support. You want your child to feel encouraged and
uplifted and supported and not burdened by not having a support network. I still wish I could wave a wand and make
it go away. But together as a family, we all support her
and just do the best that we can. We really have advanced the science. It’s very rewarding to know that our work
has had an impact to all MPN patients. Stephanie: Not only have we brought a lot
of attention and financial support to the MPN community, we’ve helped to fund some
very important research that was not happening at the time when Friends of ET had started. Celia: I feel very humbled and also very rewarded
that the work that I started in 1999-2000 has paid off. Stephanie: I love that my mom has been chosen
to be an MPN Hero. She’s been my MPN Hero for twenty years. Celia: To be recognized for the work that
I’ve done, to have it be nationally recognized is a very, very special reward. I will carry that in my heart forever.

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