NGF Mentor: Cyndi Frank

Cyndi Frank
California
Adult with Gaucher/ advocate/ speaker/ works for NGF
Email: cyndi@gaucherdisease.org

I have been the Director of Development of the National Gaucher Foundation since 2005. I have 18 years of fundraising and event planning experience in the non-profit sector and has helped to raise millions of dollars for many non-profits including The Sierra Club Foundation, Sierra Club, San Francisco Food Bank, Jewish Community Center of San Francisco and Sports4Kids.

I received a Bachelor of Arts degree in English from San Diego State University with an emphasis in Creative Writing and a Certification to teach English as a Second Language in Applied Linguistics. After several years of writing, editing and teaching English, Cyndi stumbled across a job in the non-profit sector and realized that this would be the career path to move forward with. I learned that although program is the backbone to all non-profit organizations, funding makes them a reality and I wanted to raise the funds that would make the programs happen.

I am an Adult with Gaucher; diagnosed in 1976 at age 13 before treatment was available. Part of my passion for helping various causes stems from my personal experience with having Gaucher disease. Diagnosed at age 13 in 1976, I have had many of the symptoms common to Gaucher patients: low red blood counts, easy bruising, excessive bleeding, enlarged abdomen, low energy and bone pain. Gaucher symptoms and countless hospital visits kept me from being able to work throughout my 20s until I started receiving Enzyme Replacement Therapy in the early 199s.

Without a specialist in my home town on Long Island, I first visited the National Institutes of Health the year after I was diagnosed where I continued to visit at least once a year for tests and research until treatment became available. At 25 I had one of the first success partial splenectomies, which drastically changed the quality of my life.

I took part in the NIH low dose Ceredase protocol from 1990 – 1992 and for the first time met other people affected with Gaucher disease. I realized then that there was so much more I could be doing for Gaucher disease, although it took me years to find the appropriate venue. Since I’ve been receiving ERT, my quality of life has drastically improved to the point that I have a normal and healthy lifestyle.

Five years ago when I turned 40, I experienced a string of illnesses for over a year, both directly and indirectly related to Gaucher disease. When one of the illnesses nearly took my life, I realized that it was time to get more active within the Gaucher community. I was fortunate enough to make the acquaintance of the wonderful family at the National Gaucher Foundation and join the team as the Director of Development. My goal is to help find alternative treatments and a cure for Gaucher Types I, II and III. When I no longer need infusions every other week, I plan to live on a tropical island.

I was diagnosed with Gaucher disease when I was 13 years old. Before treatment was available, I suffered from many of the symptoms typical to Gaucher Disease that affected my every day living. Because having Gaucher disease impacted both my physical and emotional selves, I decided I wanted to work within the Gaucher community so that I can continue to learn and grow from my disease while having the opportunity to help others who suffer from the same disease.

I have volunteered in three drug trials and plans to participate in more. I believe that if you want something done, then you must go out and get it done. So in order to get more treatments to market, I participated in those drug trials that accepted me and are approved by my doctor for participation.

Through the National Gaucher Foundation I attend many Gaucher patient meetings as a representative of the NGF and as a speaker and advocate for Gaucher disease. I also collaborate with the UCSF Treatment Center and Genzyme, speaking at educational meetings, seminars and conferences. With the NGF I organize fundraising and awareness events with volunteers across the country, and I have written articles, appeared on television and radio interviews, and spoken at various meetings and events about Gaucher disease and my personal experience coping with the disease. I will do just about anything to raise funds for this disease and raise awareness and educate others about Gaucher. My belief is that knowledge is power, and through education about Gaucher we can give people the power to make the right choices in their lives.