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Fall 2005 Volume 6, Issue 6:
Education, Advocacy, and Awareness: Profile of Robin Tuohy
My family's journey through cancer began in September of 2000. My husband, Michael, and I were enjoying a family vacation with our children, Allison and Mikey, then ages 7 and 2. On one of the "kiddie" rides at Santa's Village, Michael experienced ex
12.08.05

My family's journey through cancer began in September of 2000. My husband, Michael, and I were enjoying a family vacation with our children, Allison and Mikey, then ages 7 and 2. On one of the "kiddie" rides at Santa's Village, Michael experienced extreme back pain. After numerous medical tests, we first heard the words "multiple myeloma." Michael was 36 years old.

After the diagnosis, we were shocked, scared, and anxious. Fortunately, we found the IMF and were impressed with the extensive information and support provided by this organization. In 2001, with the help of the IMF, Michael and I started the first myeloma support group in Connecticut. After attending the blood cancer hearings in which Geraldine Ferraro announced that she had multiple myeloma, we were further inspired to become advocates for the myeloma community. Through our involvement with the IMF and with our support group, we strive to reach out to myeloma patients and their caregivers to help them better understand this disease.

Earlier this year, Susie Novis invited me to work for the IMF as an assistant to Andrew Lebkuecher, Director of Support Groups. I have truly enjoyed working at the IMF and building relationships with other myeloma support group leaders, as well as patients and caregivers. This job is more like an act of love.

It has been my pleasure to visit myeloma support groups in Rhode Island, Pennsylvania, and New Jersey; and I look forward to my upcoming visits to groups in New York, Vermont, and Ohio. If you are interested in having me visit with your group, please contact me at Tuohy@snet.net or 203-206-3536. I am genuinely thankful to have the opportunity to help you, your family, your support group, and the extended myeloma community.

Statistically, cancer patients who attend support groups do better! If you do not yet belong to a support group, let us help you find one in your area. Just contact me, or visit www.myeloma.org and click on the "People Helping People" link.

I am sorry that your lives have been touched by myeloma. But, along with the rest of the IMF staff, I take heart in doing my best to assist you in any way I can. Let's work together to find a cure, while helping each another along the way on our journey through cancer.


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