Jan Bariski
Vice President
Early in our 6 year battle with Jim's LeioMyoSarcoma we were introduced to the NLMSF by Karen Gibson. The members of the foundation became our friends and provided us with a wealth of information and resources. While attending the past 6 HugFests I came out of my comfort zone by wanting to make sure people who were attending were introduced to others with similar diagnoses and treatments.
A year ago I became a board member of the NLMSF Board of Directors. My area of interest is patient advocacy, caregivers and end of life issues. Near the end of Jim's courageous 6 year battle, he was denied a chemo trial that gave him 30 percent shrinkage of his multiple tumors. I don't want this to happen to anyone else. I fought the doctors telling us the drug company would never change their decision on giving Jim the drug. These same doctors learned that I might be quiet, but I am persistant. Just before Jim died, the doctor in charge of this trial personally contracted me and said Jim could have the drug if I could get him to Philadelphia. Unfortunately by then Jim's disease had progressed to the point he couldn't tolerate a two hour ride from our home in south central Pennsylvania.
This week a friend asked me to speak about my breast cancer at a fundraiser she was organizing. I told her that my breast cancer was a non-event compared to Jim's LeioMyoSarcoma. I have committed my future to spreading awareness of LeioMyoSarcoma, helping to raise money for funding research, providing a place where caregivers can vent their concerns, and seeing that no one is denied treatment because the researchers don't want their "numbers to look bad"
I grew up in New England where at the age of 3 I decided I wanted to be a dental hygienist. Years later I earned a Bachelor of Science in Dental Hygiene and have been practicing in the same office for 34 years. I love knowing my patients so well and I have learned so much from them.
Jim's death in December 2007 marked the second time I was widowed, as my first husband died fairly suddenly when our girls were just 3 and 5. Jim was a remarkable stepfather to the girls, was so proud and in awe of our 4 grandchildren, ages 2, 3, 4 and 5 and truly loved our son-in-laws.
I am proud to say that my loyal friends have helped to make Susan Smith's "Night at the Races" a great fundraising event.
I recently returned from my second Bridge Walk in Michigan where we spent the weekend bring awareness to LeioMyoSarcoma.
I encourage anyone going through the LMS journey to contact me if they think I can be of any benefit to them.
September 2008
Early in our 6 year battle with Jim's LeioMyoSarcoma we were introduced to the NLMSF by Karen Gibson. The members of the foundation became our friends and provided us with a wealth of information and resources. While attending the past 6 HugFests I came out of my comfort zone by wanting to make sure people who were attending were introduced to others with similar diagnoses and treatments.
A year ago I became a board member of the NLMSF Board of Directors. My area of interest is patient advocacy, caregivers and end of life issues. Near the end of Jim's courageous 6 year battle, he was denied a chemo trial that gave him 30 percent shrinkage of his multiple tumors. I don't want this to happen to anyone else. I fought the doctors telling us the drug company would never change their decision on giving Jim the drug. These same doctors learned that I might be quiet, but I am persistant. Just before Jim died, the doctor in charge of this trial personally contracted me and said Jim could have the drug if I could get him to Philadelphia. Unfortunately by then Jim's disease had progressed to the point he couldn't tolerate a two hour ride from our home in south central Pennsylvania.
This week a friend asked me to speak about my breast cancer at a fundraiser she was organizing. I told her that my breast cancer was a non-event compared to Jim's LeioMyoSarcoma. I have committed my future to spreading awareness of LeioMyoSarcoma, helping to raise money for funding research, providing a place where caregivers can vent their concerns, and seeing that no one is denied treatment because the researchers don't want their "numbers to look bad"
I grew up in New England where at the age of 3 I decided I wanted to be a dental hygienist. Years later I earned a Bachelor of Science in Dental Hygiene and have been practicing in the same office for 34 years. I love knowing my patients so well and I have learned so much from them.
Jim's death in December 2007 marked the second time I was widowed, as my first husband died fairly suddenly when our girls were just 3 and 5. Jim was a remarkable stepfather to the girls, was so proud and in awe of our 4 grandchildren, ages 2, 3, 4 and 5 and truly loved our son-in-laws.
I am proud to say that my loyal friends have helped to make Susan Smith's "Night at the Races" a great fundraising event.
I recently returned from my second Bridge Walk in Michigan where we spent the weekend bring awareness to LeioMyoSarcoma.
I encourage anyone going through the LMS journey to contact me if they think I can be of any benefit to them.
September 2008
