Page 36 - Community Newspapers 6369

How My Life Changed

6 YEARS AGO…

By Stacy Alonso

groups in Palm Beach, Broward, and more rewarding than just donating
Miami-Dade. I walked out of that first to a cause. I have learned and am still
meeting with a new respect for what learning about non-profits and charity
a small group of people can do and work. I have a new respect for how
ince 2007, my husband, with a new title: Treasurer. difficult it is to raise money. I found
Jose, and I have had a small While serving on a board of thousands of organizations trying
accounting firm. It is a full-time directors may seem glamorous to to raise money for causes. Some
job helping run the business
Sand helping clients while also many, it is not. It comes with little organizations are great, others…
recognition and lots of work, meetings not so much. It is critical for your
being a wife, mother, maid, cook... you and more. I do not get paid for it or organization to be recognized as
get the picture. That said, in 2013, receive any special perks (except the being well run. The Scleroderma
when Jose and I were approached by time I got to meet Jason Alexander Foundation is a 4-star rated charity on
the Chapter President of the Sclero- from Seinfeld). Charitynavigator.org. We work hard
derma Foundation, Jerry Lance, we Making that decision to step up to keep up that rating.
were hard pressed not to help. Jerry 6 years ago has changed my life. I Our chapter is proud to have
needed a treasurer for this nonprofit never say I am too busy and, in fact, given over $45,000 for direct research
and since Jose was overwhelmed have learned to managed my time funding. The Foundation, as a whole,
with work, it fell upon me. I agreed to better to accommodate my additional has contributed an average of $1
meet with them to assess their needs. responsibilities. million per year for research funding.
I had time... right?? Of course, excuses I also found that my empathy The Foundation now has 20 chapters
are easy. level has increased. Not that I was and 160 support groups across the
On my way to their board meeting
in Broward, an hour from my home, a bad person to begin with! I have country.
People ask me why I am involved
just learned that people who are
I questioned what I was doing having fighting a chronic, debilitating disease in Scleroderma. Do I, have it? Does
never served on a board with little need to be acknowledged and have someone I love have it? My answer
free time. Upon arrival, this group their disease recognized. When this is always the same: No, I don’t
welcomed me with open arms. I was person says that they are tired, I have it and yes, many people that
deeply moved by how this disease don’t say “me too”. I understand I have grown to love do have it. It
had touched each of their lives directly that their tiredness is to the bone, is heartbreaking each time that we
or indirectly and agreed to help. They beyond anything that I have ever felt. lose a member of our group to this
quickly educated me about this rare Therefore, I now ask them “how can I disease. We hope that someday,
disease that gets so little funding help you?” our little group of Directors will
because only 300,000 people in the Volunteering and being directly not be needed any longer because
United States are affected. involved with Scleroderma is so much Scleroderma has been cured.
Unlike cancer and heart disease,
rare diseases such as Scleroderma
are equally devastating with no For more information regarding
cure yet. The Foundation mission's The Scleroderma Foundation,
is one of bringing about awareness, Southeast Florida Chapter, please
educating families on how to cope, call Ferne Robin, Executive Director,
and stimulating and supporting at 954-798-1854, e-mail her at
research. The Southeast Florida sclerodermasefl@gmail.com or
Chapter helps in this effort by go to www.scleroderma.org.
assisting and organizing local support

36 INSPIRE HEALTH March § April