NGF Mentor: Cyndi Frank

Cyndi Frank
California
Adult with Gaucher/Advocate/Speaker/Works for NGF
Email: cyndi@gaucherdisease.org

Cyndi is the Director of Development of the National Gaucher Foundation and has worked with the NGF since 2005. She has 21 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. She serves on the Board of Directors of the Association of Fundraising Professionals Wine Country Chapter and currently acts as their Vice President of Programs.

Cyndi 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 her career path. She quickly learned that, although program is the backbone to all non-profit organizations, funding makes them a reality and she wanted to raise the funds that would make the programs happen.

Cyndi was diagnosed with Gaucher disease in 1976 at age 13 before treatment was available. Part of her passion for helping various causes stems from her personal experience with having Gaucher disease. She was symptomatic her whole life with many of the symptoms common to Gaucher patients: low red blood counts, easy bruising, excessive bleeding, enlarged abdomen, low energy and bone crises and bone pain.

Without a specialist in her home town on Long Island, Cyndi first visited the National Institutes of Health the year after she was diagnosed where she continued to visit at least once a year for tests and research until treatment became available. In 1988 she had one of the first successful partial splenectomies, which drastically changed the quality of her life.

A few years after her splenectomy, Cyndi took part in the NIH low dose Ceredase protocol from 1990 – 1992 and instantly reacted positively to treatment and started to feel better. Her quality of life drastically improved on treatment and she felt she could have a normal and healthy life. Cyndi had been diagnosed with Gaucher 15 years prior to the protocol, and for the first time she met other people affected with Gaucher disease. She realized then that she wanted to connect with others in the Gaucher community so that they would never feel isolated with their disease they way she did. But severe Gaucher symptoms and countless hospital visits kept her from being able to function well and left her unable to work when she graduated from college in the late 1980s until she started receiving Enzyme Replacement Therapy in the early 1990s.

In 2003, when Cyndi turned 40, she experienced a string of illnesses for over a year, both directly and indirectly related to Gaucher disease. When one of the illnesses nearly caused her to die, she realized that it was finally time to get more active within the Gaucher community. She 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. Her goal is to help find alternative treatments and a cure for Gaucher Types I, II and III.

Over time, Cyndi has participated in three drug trials to help bring Gaucher treatments to market. She is currently involved in her fourth drug trial, an oral treatment that she hopes will come to market in a few years. When an oral medication becomes available and she no longer needs infusions every other week, she plans to live on a tropical island.

Through the National Gaucher Foundation Cyndi attends many Gaucher patient meetings as a representative of the NGF and as a speaker and advocate for Gaucher disease. She organizes fundraising and awareness events with volunteers across the country, has written articles, appeared on television and radio interviews, and spoken at various meetings and events about Gaucher disease and her personal experience coping with the disease. She will do just about anything to raise funds and awareness and educate others about Gaucher. Her 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.