All~ I am crossposting this email from my sister (I hope it is ok with her, I told her I was going to). It tells alot about her condition in her own words. Desmoid tumors can strike anyone, at any age. Although they are benign, they are invasive. I realize there are lots of pleas for donations online, but this is another worthy cause. Currently, there is no Desmoid Tumor Research facility in the United States. You can donate online (a link is provided at the bottom).

I have made my donation.


Subject: First Annual Fund-raiser for Desmoid Tumors!!! june 1st

As you know, I have a Desmoid tumor that I have been dealing with since I was 23. There is no cure, most treatment is surgery or amputation, then chemo and radiation. They do not know if any of this really works because about 75% of desmoid tumors come back in the site of the removed tumor.

My tumor was removed 15 years ago then grew back after I had kids. It was treated with chemo to stop the growth. I have a MRI each year to see if it changes. Surgery is not an option anymore due to the muscle and tissue mass taken out from my right hip/leg area the first time. If it grows again I will have to possibly have my leg removed. I am one of the lucky ones; I can pretty much go one with my life until it changes. It slows me down but does not stop me. Some cases are not that lucky. Some people get them in the neck, which can cut off air supply. Other countries do not have great technology that we have and doctors just amputate legs, arms, etc. Children get them, too and with their hormones they usually grow quickly.

If you can donate anything it would be greatly appreciated, or know of a business that would donate, please send them the information below. It is not a well known disease or one that a celebrity endorses, so we are regular people trying to find a cure. The e-mail below I have forwarded is from the desmoid research clinic in New York that I have been waiting years for someone to start.



Dear Desmoid patients, family and friends,

Just a quick update on DTRF activities-

We are excited to announce our First Annual Fund-raiser on June 1st!&; If you live in the New York area (or plan on visiting) we encourage you to attend and support the foundation and it’s quest for a cure! Please revisit ( for details and reservations.

Also we have received an INCREDIBLE GIFT! A very generous donor has offered to match all donations to the foundation received by July 1st. We have already received letters of intent from several research institutions that are interested in finding a cure for desmoids. We need your help in funding this research! We are all in this together.

Thank you in advance,

Marlene Portnoy