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Melissa Chinn

Lauren Skop Ryan – We Love You

By: Melissa Chinn, posted on June 20th, 2014

Ryan Corrie Lauren & JimThe below post was written by Jim Chapdelaine, featured in this photo as well. The words could not be more perfect to describe such an amazing and inspirational woman.

Yesterday, the news came. News that I was expecting but stopped me in my tracks.
Everything about it was wrong. Our friend, a founder and the giddy up in our go, was gone.

There was a flurry of pictures and beautiful comments about this amazing woman on social media. I remained preoccupied with Lauren Skop Ryan’s passing until I couldn’t hold it in any more. I wept. I wept for her and her husband, Matt and “her babies”. I thought about all of the lives she managed to change or affect by doing something amazing.

Lauren, from her high school photos and some conversations, seemed like, at one time, may have been an ordinary person. I never met that person. I never saw “the hair”. The person I met was, by all accounts, metrics and time spent, an extraordinary person. We read about them or see them in movies. She was an ordinary person whose life was turned upside down, in the most adversarial way, by Angiosarcoma, and rather than go about her business quietly, became extraordinary. Adversity can do that and I see it in many members.

This is a disease I am familiar with and am a long term survivor. Lauren and a few others with AS, decided they would not take this lying down. Lauren would not become a statistic but would organize and collect people along the way, who could help find a cure for this merciless thing. I cannot describe what she built. Pridefully and willfully, she confronted the darkness and brought her light to organize a community of like minded people. She did something miraculous. AS cuts a wide, indiscriminate path. While a rare cancer, it does not care about race, creed, religions, hobbies or belief systems. When I first stumbled into the group, I was welcomed with open arms. It is a caring community with a shared goal.
Because AS is indiscriminate as to who hosts it, we have a group with wide ranging opinions on politics, religion and other important life decisions. But here’s the thing that I marvel at. It is a model society. A place where convictions are welcomed without judgement, beliefs are not judged or argued about. How? Why? Our country is paralyzed by these very issues. Here, they are tabled.

Lauren knew that we all have a common, over arching goal that renders those things irrelevant to the group. We all want to live. More importantly, we all want each other to live. Scientists offer science. People with similar presentations compare notes. And always with great affection and love. What may have started as a simple support group is becoming an unstoppable force, populated with more extraordinary people.

Lauren accomplished what a government cannot. She found the common goal amongst a commonly afflicted group of folks and created an environment that extracted the best from each of them. This, alone, is astonishing. She was devilishly funny, raised money and got things done. And she raised her babies with her husband Matt. This “ordinary” person did that!
And she did while being assaulted unmercifully by this very disease that she set out to destroy.

One day, a fearful young mom will be diagnosed with AS. That mom might be cured because of the collaborative efforts set in place by Lauren Skop Ryan. That mom will get to raise her babies. Lauren would want that for anyone because she was so full of love.

I hope she is given a royal send off because she was a Queen.

After that, I hope we honor her incredible achievements by doubling our efforts to fight this stuff.
By continuing to love each other and share treatment stories and support each other.
If you’re a member, do what Lauren was so good at – use your talents and bring them to bear to vanquish this beast. And do it with a heart full of love and a few laughs in your pocket.
I raise my glass to a heroic human, to Lauren Skop Ryan, whose legacy begins now.
To you, Sista.

Funeral Information

Melissa Chinn

Angiosarcoma Presentation by Corrie Painter

By: Melissa Chinn, posted on May 15th, 2014

Corrie Painter was asked recently to give a talk about Angiosarcoma to the cancer biology department at Umass Medical School for a retreat that they had. She accepted the invitation, but made the talk for all of you. This is a 25 minute talk with Corrie’s voice overlaid on the slides. There are some graphic pictures here, and some stark realities about this disease.

Melissa Chinn

Steps Toward a Cure

By: Melissa Chinn, posted on May 5th, 2014

The 4th Annual Angiosarcoma Awareness 5k, in Oxford, MA, as well as the 2nd Annual Angiosarcoma Steps Toward a Cure, in Troy MI, were held May 3rd, 2014. These two races had one common purpose, to raise money and awareness for angiosarcoma, a rare and aggressive cancer that starts from the lining of blood vessels.

Race directors, Ted Painter, Oxford and Ryan Humphrey, Troy drew in over 600 registered racers and raised over $65,000.00. “We were very fortunate to have corporate sponsorship this year, and would very much like to thank the law firm Pachulski, Stang, Ziehl and Jones, Peter Kraviitz, of Province, as well as the Ryder Charitable Foundation for their financial contributions” said Mike Mandell, Treasurer, Angiosarcoma Awareness Inc.

The money raised will go toward the development of an angiosarcoma tissue bank, as well as to basic research focused on finding a cure for this deadly disease.

Melissa Chinn

Scientist-runner fights to defeat rare cancer

By: Melissa Chinn, posted on April 15th, 2014

Scientist Corrie A. Painter of Oxford in a research lab at the University of Massachusetts Medical School in Worcester. Dr. Painter, who was diagnosed with angiosarcoma cancer in 2010, is working with the medical school to establish an angiosarcoma tissue bank. (T&G Staff/TOM RETTIG)

Scientist Corrie A. Painter of Oxford in a research lab at the University of Massachusetts Medical School in Worcester. Dr. Painter, who was diagnosed with angiosarcoma cancer in 2010, is working with the medical school to establish an angiosarcoma tissue bank. (T&G Staff/TOM RETTIG)

Sunday, April 13, 2014
www.telegram.com view article

OXFORD — Every time a sneaker slaps the ground on May 3, Corrie A. Painter moves one step closer to her goal of finding the cure for angiosarcoma.

And like the runners in the fourth annual Angiosarcoma Awareness 5K Race, it can’t be fast enough.

In 2010, when at 37 years old, she found a lump in her breast that turned out to be one of the worst cancers: angiosarcoma, Dr. Painter went online to learn more. The scientist in her found a Facebook page started by another patient, Lauren Ryan. It was a support group, really, where a handful of people wrote that they’d been diagnosed and didn’t know what to do. She was working on her doctorate and she had some ideas.

But funding research for a rare cancer that at that time was thought to affect only 300 people worldwide each year was not going to be easy. The federal government must spend money for research so that the largest number of people are helped, and Dr. Painter understood that.

“It is what it is. It has to be that way,” she said. “And I get that.”

So she knew if she was going to be able to get funding for some specific research to get started, she’d have to do it herself. The road race is just one of the fundraisers she and her “family” of angiosarcoma fighters have put together to fund research that could one day save their lives. They’ve also found sponsors including Ryder Charitable Foundation, Pachulski Stang Zeihl & Jones, Province and D3 to help fund the studies.

Her husband, Ted Painter, a marathoner, organizes the road race, working constantly to promote it because every dollar is important. Other fundraisers across the country include cycling events and a white water rafting trip, which Dr. Painter has made with her stepson and one of her daughters.

While she’d planned to do her postdoctoral work studying Lou Gehrig’s disease — amyotrophic lateral sclerosis or ALS — she changed her plans and began focusing on cancer. Angiosarcoma is a blood vessel-driven tumor, and if scientists could find a way “to stop these types of blood vessels,” they’d be making progress. She had to find a way to make that happen because the research could be helpful for other types of cancer, as well.

But there would need to be studies and research and Dr. Painter wanted to surround herself with the top people in cancer research, the most important people in the field. It didn’t take long until those people were reaching out to her. Every night, after her work day ends, she heads home and works on angiosarcoma activities, connecting patients with the right doctors, working on funding, checking in on research.

“She is angiosarcoma,” Mr. Painter said. “She’s really the one making this stuff happen, she literally does it all by herself. She’s amazing.”

Since 2010, the Angiosarcoma Awareness group, now with a website, cureasc.org, has funded three-quarters of a million dollars in research at five laboratories throughout the country. There are currently two ongoing clinical trials that have provided patients and their families with assistance in finding treatment options. They’re also working with the University of Massachusetts Medical School to establish an angiosarcoma tissue bank where scientists could access tissue from angiosarcoma tumors.

Twice each year, Dr. Painter, who spends her time at the University of Massachusetts Medical School doing research on melanoma, travels to Memorial Sloan-Kettering to meet with researchers there. She hears about their studies, offers input and watches as they move closer to her goal.

The group also funds studies at the University of Texas M.D. Anderson Cancer Center in Houston, the University of Minnesota, Washington University in St. Louis and Moffitt Cancer Center in Tampa.

But for her and others who have had a diagnosis of angiosarcoma, waiting is difficult. The angiosarcoma Facebook pages are filled with messages of hope that start out with “Clean scans!!!” countered by other posts which begin with RIP as another member of the group is taken.

“When we find the cure, it will be bittersweet,” she said. “Almost everyone who was on that page when I found it is gone. Every single one.”

The cancer has a small survival rate at five years after diagnosis. About 30 percent live that long, a frightening reality the Painters don’t think about as often now as they used to because it does no good. But it’s there. The family knows some long-term survivors and that provides hope.

Still, a cure is what they’d like to see, and the sooner the better, and so this year, they are beefing up the race.

“Dick and Rick Hoyt from Team Hoyt will be there,” Mr. Painter said. “And this year we have sponsors: Isador’s Organics, the Motivact Group and Sneakerama. So there will be face painting, a DJ, balloon animals and a bounce house.”

The Hoyts will have completed their 32nd Boston Marathon and have said it will be their last.

Mr. Painter said the race usually draws about 100 runners and walkers, but he would love to see a larger number this year. There are also opportunities to volunteer and there will be raffles, including tickets to a Red Sox game.

While the angiosarcoma race is sanctioned by the USA Track and Field organization and official times will be recorded by the Central Mass. Striders, it is open to all ages and abilities, including those who wish to walk the 3.1-mile course.

There is also a ¼ -mile (400 meter) kids’ race for ages 5 to 12 at 8:45 a.m., before the 5K. Awards will be given to the top three finishers in three age groups (5-7, 8-10, 11-12). Children can be registered online or at the race.

To learn about the race or to register, visit www.curesasc.org. The race begins at 9 a.m. May 3. Parking is available at Oxford High School, 495 Main St. The registration fee is $25 and all of the funds support angiosarcoma research.

Contact Kim Ring at kring@telegram.com. Follow her on Twitter @kimmring.

Melissa Chinn

4th Annual Angiosarcoma Awareness 5k (Oxford, MA)

By: Melissa Chinn, posted on March 5th, 2014

The 4th Annual Angiosarcoma Awareness 5K (3.1 mile) Race & Walk is on May 3, 2014 in Oxford, MA.

We are proud to announce that special guests Dick Hoyt, Rick Hoyt, and members of Team Hoyt New England will be joining us! .

The cost for adults to participate is just $25.00 and includes a t-shirt!

register-adult

You can now register your kids (ages 5-12) to participate in our Angiosarcoma Awareness 1/4 mile kids race, occurring before the 4th Annual 5K Race & Walk.
The cost is just $10.00 and includes a t-shirt!
Additional kids activities include face painting, balloon animals, Blinky the Clown, DJ, and more!

register-kids


The purpose of this race/walk is to raise awareness and money to fund Angiosarcoma research. Angiosarcoma is one of the most aggressive cancers and has a dismal prognosis with a 5 year overall survival rate of only 30%. Angiosarcoma Awareness, Inc. identifies, assesses, and funds laboratories with the ability to conduct angiosarcoma research. We are currently funding a lab at the Memorial Sloan-Kettering Cancer Center and we have partnerships with labs at the University of Minnesota and at the MD Anderson Cancer Treatment Center at the University of Texas.

The 2nd Annual Angiosarcoma Awareness Run/Walk will be held in Troy, MI on Saturday, May 3, 2014 as well! Click here for more details!

Melissa Chinn

2nd Annual Angiosarcoma Awareness 10k/5k (Troy, MI)

By: Melissa Chinn, posted on March 5th, 2014

The 2nd Annual Angiosarcoma Awareness: Steps Toward a Cure 10K and 5K Race & Walk will be held, once again, at Troy Athens High School on May 3, 2014 in Troy, MI

The cost for the 10K and 5K courses is just $30.00 and includes an official event t-shirt and event bag full of goodies from our amazing sponsors.

You can now register your kids (ages 5-12) to participate in our Kids Superhero Dash, which will be held at the finish of the 10K and 5K runds.
The cost is just $10.00 and also includes an event t-shirt!

button_sponsorOVER button_registerOVER button_volunteerOVER

The purpose of this race/walk is to raise awareness and money to fund Angiosarcoma research. Angiosarcoma is one of the most aggressive cancers and has a dismal prognosis with a 5 year overall survival rate of only 30%. Angiosarcoma Awareness, Inc. identifies, assesses, and funds laboratories with the ability to conduct angiosarcoma research. We are currently funding a lab at the Memorial Sloan-Kettering Cancer Center and we have partnerships with labs at the University of Minnesota and at the MD Anderson Cancer Treatment Center at the University of Texas.

The 4th Annual Angiosarcoma Awareness Run/Walk will be held in Oxford, MI on Saturday, May 3, 2014 as well! Click here for more details!

Melissa Chinn

Raft 4 Life 2014 Dates

By: Melissa Chinn, posted on February 28th, 2014

raft-4-life-2014-coloma-ca

Raft 4 Life is an amazing opportunity to raise funds for research through collaboration with Angiosarcoma Awareness, Inc., all while enjoying life with some of the world’s most amazing people, sharing stories, and laughing despite the difficult journey of cancer life has chosen for some in attendance.

Rivers have been a positive, connecting journey that our family has shared for decades. Personally, nothing makes me happier then to share the exhilarating and bonding experience of running rivers. With my experience, I have grown as a person. The river teaches lessons and builds character. Most importantly, the river is a place where you can let go just for a moment; you make new lifetime friendships while challenging yourself beyond your personal boundaries. I encourage you to join us each and every year. The fundraising is very important, but the event is so much more than that.

Life is contagious. Living by the moment is the very essence of this event. It teaches us all that no matter what life chooses to put in our way; teamwork, hope, dedication, courage, and strength can help get us to the next step. The water isn’t always smooth, but together we can conquer the rapids.

Thank you for being on this journey, for joining us year after year, and for sharing your lives. Raft 4 Life is a life-changing experience that cannot be retold; it has to be experienced firsthand. We look forward to seeing you at the event!

To view photos from last year’s weekend, please click here to be redirected to our Shutterfly album.


julie-caroleFor those who do not know me, my name is Julie Stanley. Being a caregiver for my mother, Carole Stanley, when she first battled breast cancer followed by her battle against rectal cancer, led me to be acutely aware of what cancer patients face. Additionally, it allowed me to directly experience the effect cancer has on their loved ones. After the first two battles, our family put cancer aside and tried to get back to normal. It was an unwelcome disappointment when my mother’s third type of cancer, angiosarcoma, was diagnosed.

Angiosarcoma is a rare and aggressive cancer of the blood vessels. It is a subgroup of sarcoma, and unfortunately, the prognosis is grim. My father, Mel Stanley, took the anxiety and desperation he acquired by her diagnosis and used it to his advantage. He was determined to find some answers. With dad’s unwavering resolve, it all paid off. Dad initially found the Facebook group for angiosarcoma (www.facebook.com/groups/101899709845272), which led him to the non-profit organization, Angiosarcoma Awareness, Inc. (ASA) (www.cureasc.org). We met this amazing group of individuals who were also fighting for their lives, or acting as caregivers for those fighting, against angiosarcoma. ASA is a patient led, federally registered nonprofit founded by Lauren Ryan and Corrie Painter. Through this wonderful organization, we have come to know the world’s most beautiful people.

In the meantime, my mother’s strength is contagious. She is a fighter, and even more than that, she has already been a two-time survivor giving hope to people who have recently been diagnosed. With her determination, she is once again cancer free.

I was inspired by Corrie Painter. I met her at the San Francisco event – Cycle for Survival (www.cycleforsurvival.org). I cannot begin to put into words the enthusiasm, energy, and upbeat atmosphere I witnessed at that event. I was hooked, and I wanted to do more. As Corrie and I spent time together, we shared our common interests. As it turned out, Corrie was a whitewater rafting guide in the past as well. We reminisced on stories of our favorite moments on and around rivers. The enthusiasm and positive experience I took from the Cycle for Survival event sparked an idea. Without hesitation, Raft 4 Life was born!

Running rivers has been a favorite sport among the Stanley Family. Together, we have shared many moments rafting on rivers, such as the Colorado River through the depths of the Grand Canyon. In addition to myself, both my two older brothers, Doug and Todd Stanley, have been professional raft guides as well. In my mind, I compare fast flowing and difficult rivers as a metaphor for fighting cancer. When you have a paddle in your hand and your team is entering a rapid, you paddle together and have the same goal in mind; to make it through the wave and down the backside. In certain moments, the waves crash into your face challenging you to stay strong and face the unknown, as does the journey against cancer. As we continue to battle on, we are all hoping to make it through for another chance at life.

Melissa Chinn

Cycle for Survival 2014

By: Melissa Chinn, posted on January 14th, 2014

Our involvement with Cycle for Survival began three years ago when we approached the sarcoma department at Memorial Sloan-Kettering in order see if we could foster a research project focused on angiosarcoma. We were connected with Jen Linn, co-founder of Cycle for Survival, who inspired us to work the team at Cycle in order to raise the necessary funds to accomplish this goal. As a result, we have been able to fund a major research initiative in the lab of Cristina Antonescu, MD at MSKCC for three years now. Her lab has since published two peer reviewed articles about angiosarcoma and has contributed to the development of the first ever clinical trial for angiosarcoma. These are amazing accomplishments that would never have been made without Cycle for Survival.

In our first year, we had teams in NYC and Long Island. Everyone who participated was amazed at how well organized, inspiring and fun the event was. The next year, we expanded and were able to encourage more people affected by angiosarcoma to get involved. This led to teams in DC, LA and San Francisco. The third year, we had 10 teams in 7 cities across the nation. We now have 15 teams in 10 cities! We are brought together in solidarity through this common effort and are able to see the immediate benefits of this event.

Click here to visit our Team Angiosarcoma Awareness National page, where you can view all of our teams and donate to one or all of them!

Thank you for your consideration and your support.

Together we will prevail!