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Working not Wishing for the Cure
LMSeAlerts

LMSarcoma Direct Research Foundation
               LMSeAlerts - March 2014 

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What's up with the Logo and Slogan for LMSdr?


Suzanne Kurtz and I created the LMSarcoma Direct Research ("LMSdr") nonprofit foundation in 2006 after returning from a CTOS conference greatly disappointed in the lack of ANY leiomyosarcoma studies.  


LMSdr's name reflects the fact that we raise donations "directly" for research grants, and we are advocating (directing) researchers to help us get treatments that work.  


The heart is pointing to the future, where the research will find the answers and give us a better future.  


I came up with the slogan, "Working not Wishing,” after Suzanne expressed the old cliché, "If you want something, you have to work for it, not wish for it."  It hit me like a train.  Cancer patients spend so much energy wishing and hoping that someone or something will miraculously save their lives.  So it became our motto, "Working not Wishing."  


LMS took our founder and friend Suzanne in 2008, but her dedication and hard work lives on as LMSdr. 


            - Sharon Anderson, Executive Director of LMSdr


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Photo (2005): Sharon Anderson (L) and Suzanne Kurtz (R) 


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SAVE THE DATE!
October 30th - November 1st
LIVE IT UP!  LMS Retreat 2014
San Francisco

(Registration will open in May)


2014 World Conference on Personalized Medicine


The 2014 World Conference on Personalized Medicine was held in Silicon Valley, California January 27th & 28th.  LMSdr's Sharon Anderson, Executive Director and Sarah Robinson,
Scientific Advisory  Committee Member attended to learn how LMS patients can access their own biomarker testing for tailored individual treatment plan.  This years LMS Retreat in San Francisco will have a presenter on the topic!  The LMS Retreat registration is expected to open in May.



Free Year Subscription

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Cure Magazine is chock full of cancer resources and educational articles which help patients navigate their way on their own cancer journey.  Sign-up to get your free quarterly subscription.



Baylor College of Medicine -  2 Vaccine Trials Open to LMS Patients


Register Now 

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Camp Kesem is a one-week overnight summer camp for kids with a parent who has (or has had) cancer. The camps are run by college students and are primarily for kids ages 6-13, with a few teen programs for campers ages 14-16. The camps are free and are intended to provide the campers with the extra attention and support they need. The camper to counselor ratio is 2:1.  Find a camp near you!


http://campkesem.org/

Post Office Box 1113

Lafayette, CA 94549

925-212-9044; 925-550-5698

info@campkesem.org


13 Year Thriver, Myrna Cohen Doyle

From Toronto, Canada

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I was diagnosed January 29th, 2001 during a "routine" hysterectomy for fibroids.  I had my first met in 2005 in my right middle lung.  Second met in 2008 in the same right middle lung.  I am currently a stage IV, 13 year survivor. 

 

What procedures or treatments have you had?

Partial hysterectomy, my ovaries were left 2001.  Pelvic radiation 5 weeks, 52 grays, in May 2001. Clamshell thoracotomy right middle lung 2005.  Right middle lobe removed (lobectomy) in 2008.

 

Where are you right now, medically?  Do you get scans?

I see my sarcoma specialist and my radiation oncologist once a year and get chest CT scans once a year.  Right now I am NED.

 

Advice for the newly diagnosed?

You must be your own patient advocate.  Ask questions.  Get hard copies of all of your scans and tests.  Have your samples re-tested if possible. Don't be afraid of your doctors they are human too, they are not super heroes or rock stars.

 

Try not to be afraid.  Help is out there.  Get control of your "health life" even if you think that your body has betrayed you.  Don't be afraid to ask for help. Our group has taken away so much of the fear.  Let your families be your best supporters.  They want to help but they too are afraid.

 

What is your biggest challenge as a 13 year survivor?

Planning for the future. LMS is so sneaky. I thought I had it beat after almost 5 years, the gold standard, only to have a recurrence in my lung and then another one after that.  I get nervous every 4 or 5 years because my ULMS has been so slow growing.

 

 I am hoping that there will be therapies available for all of us.  For now, surgery has been my best option.




We need everyone's help!

Contact Your Senator - The Call for an Congressional Hearing on Morcellation

Everyone, please contact your Senators and tell the you are asking for a hearing to look at the safety of uterine morcellation for women with presumed fibroids.  This surgical technique sprays cancer cells through-out the abdomen, giving the women little chance to survive her cancer.  This must stop.  For an example form letter and more update on the Morcellation campaign go HERE.


Upcoming Events


April 24 & 25th 

This is an excellent networking event for advocates of rare diseases and pharmaceutical researchers. LMSdr will be represented by Sharon Anderson, Executive Director and Sarah Robinson, Scientific Advisory Committee Member.

April 24th

"Lady Bugs" LMS Support Group Meeting

Washington DC, location TBA.  


May 30-June 3 2014 

Debra Simons, LMSdr Scientific Advisory Committee Member will be attending the American Society of Clinical Oncology (ASCO) and bringing us back the most up-to-date sarcoma information.



Update - Phase 3 Trial of TH-302

Phase 3 trial of TH-302 + doxorubicin versus doxorubicin for first-line therapy of metastatic soft tissue sarcomas, is  very close to its recruitment goal of 620 patients.  Currently, 517 patients are enrolled at 97 sites.  Learn more here.


Recommended Reading

 

Dr. David Servan-Shrieiber, spent his career researching psychiatry and neuroscience until he became a cancer patient.  His mission changed to scientifically understand the role of diet and the “cancer mind.”  This book is an international bestseller and a best read book in most cancer support centers and patients’ homes.  Available here on Smile.Amazon.com 



Shop & Donate 
to LMSarcoma Direct Research at Smile.Amazon.com

LMSeAlerts is an eNews service for families and professionals


Buy DVDs of the 2013 LMS Retreat Presentations



Visit Our Website


Join Our  

FACEBOOK GROUP

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LMSdr T-shirts and water bottles available 

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Water bottles are BPA free, dishwasher safe, 30 oz. clear purple with gripper sides, easy to clean flip top cap.

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T-shirts are unisex, preshrunk 50/50 cotton and polyester, color is blackberry.  M, L, XL, XXL.


Participate in the Paraffin Block Drive for Research

318 LMS patients have donated a primary paraffin tissue block for research  - please join us and build our tissue bank.




LMSdr advocates for and funds LMS specific research.  We've been a  nonprofit 501 (c) (3) since 2006.  For details of our past grants go to  LMSdr.org



Donate Here

     
Shop & Donate!

Shop at
and donate to 
LMSdr


LMSarcoma Direct Research Foundation
Post Office Box 52697
Tulsa, Oklahoma 74152
tel.  1-866-912-2730
fax:  1-413-502-2241
         Email:  Contact@LMSdr.org




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LMSarcoma Direct Research Foundation
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Daly City, California 94014
US

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