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March 6, 2020 Newsletter

SEATTLE DRAGONSLAYER WALK
On your marks! Get set! We are READY TO SLAY that DRAGON! Thank you for waiting for us while we developed the registration page through Greater Giving -our new portal.  You will be able to register individually or as a team, volunteer with your friends, and share your page on the "Join Me" page to raise funds to support your favorite nonprofit -NWSF! Registration will be open Monday 3/9/2020. www.nwsarcoma.ejoinme.org/dragonslayer2020

Super Jock n' Jill is sponsoring a contest for the first 10 individual people who raise $1,000.00 for NWSF. You will receive a $100.00 gift card to their store! 
Thank you to our sponsors - Skinnydipped Almonds, Staples, Super Jock n' Jill, Seattle Cancer Care Alliance (SCCA), University of Washington Athletic, and Bayer Pharmaceuticals.

Things to look forward to:  You will be cheered on by Seattle Cheer and Kennedy Catholic High School Cheer teams! Additionally, glassybaby will be bringing their popup store. There will be merchandise and a raffle with some spectacular items like an autographed football by Coach Pete Carroll, a wine tasting gift card for 2 and bottle of Brian Carter wine, and an opportunity to win a Total Wine class and tasting for you and 24 of your friends - a 500.00 value! 
Do you work for a company or own a company looking for visibility opportunities and a chance to support sarcoma patients as an event as a sponsor?  Click this link for sponsorship information! 
Spring is in the Air! Come join us for two Oregon Fun Events that embrace the changing of season and take in the beauty of nature.
Sign up to make a terrarium at Portland Nursery on April 18th

Sign up for an International Rose Garden tour and picnic on June 19th.
Seattle Dragons & Northwest Sarcoma Foundation Dragonslayers,

We were so honored to have 122 tickets given to us by the XFL team, the Seattle Dragons. Our supporters, families, and patients came out and weathered the chill in the air to have a day of fun! It was great to see so many supporters like folks from Have a Heart, Bayer, and a big fan of XFL, Kristen Bell who brought with her Mary Lampkin and Heather Brown. (pictured) Don't they look fierce!?
Stay tuned for more fun events and partnerships like this in the future- we are working on the Mariners for April and Sounders in September.
 
Helping Children Cope with a Parent's Cancer
 
As parents we want to protect our children from the emotional distress when we have cancer. Here are several excellent resources for parents.
 
Talking to Kids about Cancer
A Podcast by The Cancer Support Community
 
What Do I Tell the Kids?
PDF Guide Booklet (may take 60 seconds to upload)
 
Help with Hope has online support groups and care packages (containing a fluffy, comforting stuffed animal, journal or coloring book and a book on coping with their parent’s cancer).

When a parent has cancer: Helping teens and kids cope on the MD Anderson website

When Your Parent Has Cancer: A Guide for Teens  
A Patient Education Publication by the National Cancer Institute

Special  thanks to LMSarcoma Direct Research Foundation for sharing this helpful information!
CURRENT TRIALS

Doxorubicin Plus Dual Checkpoint Blockade for Soft Tissue

Location: Denver, CO
Contact: Dr. Breelyn Wilky    breelyn.wilky@ucdenver.edu

A Phase 1/2 Dose Escalation and Dose Expansion Study of BA3021 in Patients with Advanced Solid Tumors
 
The antibody part of BA3021 was designed to stick to a protein called ROR2, which is found on certain types of cancer cells. The cell-killing part of BA3021 is the chemotherapy drug monomethyl auristatin E (MMAE). When the antibody part of BA3021 sticks to ROR2, the ADC goes inside the cell, MMAE is released, and the chemotherapy drug kills the cancer cell. BA3021 is given intravenously (by vein).
 
Location: Sloan Kettering in NY City
Contact: Dr. William Tap at 646-888-4163.

Phase 1/2a Evaluation of AL3818 in Combination With Nivolumab in Solid Tumors

Location:  Santa Monica, California
Contact: vchua@sarcomaoncology.com   

Locations: Colorado, NY, Tenn., Oregon, TX and Florida
Contact: Vanessa Esquibel 858-263-1598

Study of TAK-228 (MLN0128) in Combination With Metformin in Patients With Advanced Cancers
 
Location: MD Anderson, Texas
Contact: Vivek Subbiah,  T. 713-563-1930
 
The drug TAK-228 targets the PI3K/Akt/mTOR signaling pathway.

Olaparib and Temozolomide in Treating uLMS 

Location: Multi locations
Contact: Melissa Burgess  412-647-8073
 
Olaparib is a PARP inhibitor.

Phase II Trial of ADI-PEG 20 in Combination With
Gemcitabine and Docetaxel for the Treatment of Soft Tissue Sarcoma 

 
Location: Palo Alto, Santa Monica CA and St. Louis, Missouri
Contact: Brian Van Tine t. 314-362-5817   bvantine@wustl.edu 

A Study of LY3435151 in Participants With Solid Tumors
Locations: Texas, Boston, Pittsburgh, Ontario, Japan
Contact: 1-877-285-4559

Location: Alabama, California, Florida, Minnesota, NY, North Carolina, Texas and Utah.
Contact: Tracon Pharmaceuticals 858-550-0780 Traconpharma.com
Seattle Sarcoma Journal Club
Special thanks to the physicians who joined us at the March 2, 2020 Seattle Sarcoma Journal Club facilitated by Dr. Amy Kim from SCCA/UWMC. Three journal articles and patient access to clinical trials and resources were discussed.

NWSF will host a Portland Sarcoma Journal Club in April 2020 facilitated by Dr. Kenny Gundle, KCI/OHSU.
Daylight Savings Time is March 8th!

Time to spring forward and plan to set your clocks ahead 1 hour. 

Loss of sleep can be an adjustment for some people.  Here are a few ideas from the Cleveland Clinic: 
  • Go to bed 15 to 30 minutes earlier tonight and tomorrow night
  • Stick to your schedule
  • Don't take long naps during the middle of the day
  • Avoid alcohol and caffeine before bedtime
Concerned about travel to treatment?  Please consult with your healthcare provider before you travel. Here are a few links for information about COVID 19: 
Donate
Founded in 1996, the Northwest Sarcoma Foundation offers hope, education and support to sarcoma patients in the Northwest.  We provide financial assistance to more than 200 sarcoma patients annually. We also fund cutting edge research.  More than 2,500 individuals participate in our fundraisers.       
Copyright © 2020 Northwest Sarcoma Foundation, All rights reserved.


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