BOSTON, Mass.- "It is kind of a constant worry," said Li-Fraumeni Syndrome Association president and co-founder Jennifer Perry.  "It's a daily challenge sometimes to put it in the back of your head and not let it run your life."

Jennifer Perry lost her mother to breast cancer and her uncle to leukemia before being diagnosed with breast cancer and a rare syndrome known as Li-Fraumeni.

Perry's two daughters and younger sister were later diagnosed with the syndrome as well.

"Li-Fraumeni syndrome is an inherited cancer predisposition syndrome," said Dr. Judy Garber, who works for the Dana Farber Cancer Institute. "That means people who have one altered gene called TP53 have a much higher risk of developing certain kinds of cancers."

Garber said those with the gene who may have battled and won against a previous form of cancer also have a 60% chance of being diagnosed with another form of cancer afterwards.

She said another challenge of the gene is that it can cause cancer at a very young age.

"Breast cancer in your 20s instead of your 50s, or lung cancer in someone who doesn't smoke," said Garber. "Again at an unusually young age or even to get more than one form of cancer. So people survive cancer more often these days, but getting another one might be a sign that there's increased risk."

In 2010, Perry co-founded the Li-Fraumeni Syndrome Association (LFSA), a nonprofit organization dedicated to promoting research and awareness in the fight against the genetic mutation.

Perry said the organization has 12 chapters around the world including Germany and Brazil, and said the organization has given her new life and purpose in being able to support her daughters and others going through life with a similar illness.

Perry, who is from Chicopee, spent Tuesday in Boston planning the organization’s next conference with Dr. Garber.

"It's going to be great," said Perry. "We're excited because this is the first time we're going to have the medical board and the scientific advisory board getting together talking about those key priorities so we're very excited about that."

Perry is currently cancer free and gets screened frequently. She encourages anyone with a family history of cancer to get tested for the gene.