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