National Uterine Fibroids Foundation

The National Uterine Fibroids Foundation (NUFF) is a non-profit organization primarily dedicated to the education, care and treatment of women who have uterine fibroids or related conditions of the reproductive system.

I'm proud to say that NUFF finally and officially incorporated in the state of California on March 22, 2000. The NUFF website went "live" on June 1, 2000 but will be going through various stages of ongoing development for some time still.

NUFF WEBSITE TIP

Visit the NUFF website today and bookmark it! You're going to want to visit that site again and again....

This organization has been in planning stages for nearly a year now and has had some terrific people supporting it every step of the way. Dr. Scott Goodwin and Dr. Michael Broder, to name just two of the many involved individuals, have been incredible in working with me to get this organization off the ground. I look forward to our continued work together as both physicians are members of the NUFF Board of Directors. I know, I know -- you want to know who else is on the Board of Directors! What a curious bunch of readers you are....sorry, but a complete listing of all the members of the Board of Directors appears on the NUFF website you'll just have to visit the NUFF website to satisfy that curiosity of yours!

Emily Campbell, from the law firm of Winthrop, Stimson, Putnam & Roberts in New York, has put in a tremendous number of pro bono hours working on incorporation documents, bylaws, and tax-exempt status documentation required by the IRS. In addition, she has served as a wonderful guiding force in ensuring that this organization start off on the right legal foot. We still have a fair amount of work to do together on this project but I definitely want to thank her from the bottom of my heart for the time and energy she has put in thus far. In addition, I'd like to thank Daniel J. McSwiggan, a partner at Winthrop, Stimson, Putnam & Roberts, for supporting this project when he was first approached last fall and, ultimately, allowing NUFF the opportunity to work with Emily Campbell. I'd also like to thank Leonie Finkell, a member of the uterinefibroids email list group, for approaching her employer -- Daniel McSwiggan -- in the first place! She put our ideas "in motion" and I'm truly grateful for her dedication and support.

A word about the name and 'NUFF' acronym....

From square one, this organization was developed with the belief that there was a need to reach women on a national level with a strong, clear, consistent voice on the research, diagnostic measures, and treatment options currently available for uterine fibroids and related conditions of the reproductive system.

The amount of confusion and dissatisfaction with the medical "status quo" regarding the uterine fibroid condition and its primary treatment option (hysterectomy) that I found on My Journey has been echoed by hundreds of thousands of women via email and phone calls. If I ever thought I was alone on this journey, I can only say that the last year and a half has taught me there are hundreds of thousands of women travelling alone on this journey as well. We need to unite. We need to become one voice speaking very loudly instead of many voices speaking in inaudible tones. We need a National organization. Now, we have one.

As for that acronym....it was deliberately chosen by its letters and then the name filled in to "make it work." Why? Because I've had 'nuff.

'nuff hysterectomies

'nuff misinformation

'nuff "mis"treatment

'nuff bleeding incessantly

'nuff changing doctors trying to find one that will listen and be supportive

'nuff hiding at home (With all those terrific uterine fibroid symptoms, who can leave?)

'nuff of "no research" that would give us a cure once fibroids have developed

'nuff of "no answers" that would help us prevent fibroids from ever developing in the first place

If you've had 'nuff too, write me! I'll be happy to add your 'nuff wishes to the list.

More 'nuffs from YOU!

'nuff of being told our symptoms are NOT THAT BAD
'nuff of being told to "watch and wait" and outrun them 'til menopause
'nuff of limited treatment options
'nuff of having to choose from the "lesser of evils" when it comes to seeking treatment
'nuff of being told it's "all in your head" -- you could feel better if you wanted to....