spent the weekend in philly
with some amazing families
all living with desmoid tumors
informative and emotional

i listened to 5 top doctors
deliver TED type talks
about their lifes passion
desmoid tumor research

these r smart peeps
they spoke to hundreds of patients
they brought their own slides
they worked the laser pointer

they answered questions
from worried mothers
from 20 years survivors
some with missing limbs

a community built around a rare disease
3 in a million
gathered together in hope of a cure
a connection

i met a beautiful young couple
whose 2 yr old blonde boy max
has a desmoid in his jaw
i wished for a magic wand

thank u to all who donated money
lots was raised for research
so one day
they will have a way to deal with
demon desmoids

on thursday i will be on the dr oz show
talking about my heart attack
tune in
let me know what u think

peace peeps

14 Responses to 'DR OZ AND PHILLY'

  1. Tiffany Roques says:

    Everyone in the DTRF family appreciates all of y’all help. I pray for a cure ASAP.My 2 yr/o has Aggressive Fibromatosis of jaw and had resection of jaw replaced with fibula and then additional surgery with cranial replacement afterwards & jaw wired closed bc it wasn’t healing,his leg tissue,muscle died, exposed bone, led to many surgeries, last 6 months has been a nightmare. Prayers go out to everyone suffering with these desmoids.My goal is telling Bostons journey & spreading awareness.

  2. Kathy Veeck says:

    Thank you to you and Michelle for all the attention you brought to this horrible tumor. I hope Michelle got some great support out of the weekend. It was really a nice and inspiring weekend! My son Max is probally going in for a partial resection next month since this tumor is growing quickly, we met with the surgeon on monday. I told Dr. Grounder and Marlene we will do whatever is needed to make sure his tissue gets donated to research! We need to find a cure for all of the desmoid patients…

  3. Amy says:

    I wasn’t able to attend the symposium or walk this year, but I hope to get there one day. Thank you so much for getting some attention to our fight!

  4. lenny M says:

    Thank you for taking your family public with this silenced killer that no one wishes to bring into the lime light..

    We need attention to find answers

  5. krystle berrigan says:


    i have been battling with desmoid tumors in my leg for ten years now. Its been a long battle and those tumors keep coming back. I have been through five surgeries, seven months of chemotherapy, and five weeks of radiation therapy last spring. I just found out few days ago that my tumors have grown back. I truly hope there will be a cure and thank you so much for playing a part in supporting the cause of finding a cure for desmoid tumors. its nice knowing we aren’t alone 🙂

  6. Mary Anne Primavera says:

    Hi Rosie,
    Great seeing you at the symposium and thanks for putting a light spin on a serious disease. I pray everyday that my daughter Christina & Michelle will be tumor free soon. Thanks for shinning a much needed light on an an aweful affliction.
    Mary Anne Primavera

  7. Laura Allis-Whitmoyer says:

    Dear Rosie and Michelle,
    Thank you for your support of the DTRF. My own daughter has been fighting this demon since age 14 in 2008. Eliza is 18 now and still fighting like hell for her life. This past summer in Houston, Dr. P led a team of specialty surgeons to sift thru her pelvic cavity. They meticulously removed as much desmoid as possible while sparing her organs. We hope that a miracle treatment will become available to give her a normal life.

  8. Amelia says:

    I’m glad Michelle is getting information and as found a community of support. And I am looking forward to the Dr Oz episode, the two of you together are something special. Maybe you could do a road trip like Gayle and O did ??? I am laughing at that set up just thinking about it! Take care Ro. xxxoo

  9. carrozza's says:

    Rosie thank you bringing much needed light to this cancer
    our daughter Maura enjoyed sharing her story in the interview.
    Yes indeed you say it best DESMOIDS SUCK!!!
    goid luck to you and Michelle in battling these monsters
    thx Mark

  10. Amy Jordan says:

    Dear Rosie,
    My Sincerest Apologies. I should have been there next to you. I am a 32 ye old air force veteran who has gone through exactly what Michele is going through, and worse. I have attended the symposium and Marathon from the beginning of it all. I fought tooth and mail to be there, to see a fellow actress, it was a once in a lifetime chance, and I failed. I hope one day we can exchange stories, and I can show you the community I am trying to build and extend from the heart of DTRF…

  11. Jen says:


    THANK YOU for your 10-23-12 Blog – MUCH LOVE;you TOTALLY ROCK!The Run/Walk for answers was INSPIRATION & LOVE!I PRAY there will be MANY answers & blessings from the weekend events in Philly!

    Even with my cane on 10-21-12,one year ago I could barely walk and talk from the devastation of my progressing MS.One year and many blessings later,my husband & I volunteered at the Run for Answers to support the inspirational “young couple” and Max! They are our Heroes.

    Prayers up for…

  12. Michele Canzoneri says:

    Thank you Rosie so very much for bringing attention to this very scary disease. My son was diagnosed @ 16 and after several surgical procedures he is now tumor free. He is and will be checked every 3 months for the next 2 years. With your help and the help of The Desmoid Tumor Foundation maybe one day we will be able to find a cure.

  13. trish says:


    it’s no secret that cannabis shrinks many types of tumors.

    until about six weeks ago, i hadn’t heard of marijuana that didn’t get you high and i consider myself a medical marijuana activist.

    juicing raw marijuana never even occurred to me. the u.s. government already has a patent on the healing compounds in cannabis.