Advocacy

2014 Adolescent and Young Adult Cancer Symposium

website-logo

 

 

PLEASE JOIN US!!!

SAVE THE DATE!!

OCTOBER 30-31, 2014

IRIS S. & BERT L. WOLSTEIN RESEARCH BUILDING

2103 CORNELL ROAD

CLEVELAND, OHIO 44106

 

The symposium is sponsored by the Angie Fowler Adolescent and Young Adult Cancer Institute at University Hospitals Rainbow Babies & Children’s Hospital, UH Seidman Cancer, Case Comprehensive Cancer Center, and the Oregon Health & Science University Knight Cancer Institute.

(REGISTRATION FORM aya symposium 2014)

The focus of this two-day symposium is advancing AYA-related research, increasing federal funding, and exploration of scientific, clinical and psychological considerations in the AYA population.

KEY NOTE SPEAKER:

Clifton Leaf, Deputy Manager Editor, Fortune Magazine and Author, The Truth In Small Doses – Why We’re Losing the War on Cancer – and How to Win It.

FOR MORE INFORMATION PLEASE CONTACT: AYASYM2014@UHHOSPITALS.ORG 

 

 

ASK ME WHY IT’S NOT OKAY?

 

Our weekend in Washington DC began with important meetings with  USA government officials from Congress, The White House, National Institute of Health, National Cancer Institute and Department of Defense.

 

IMG_0957

CAC2 President Vickie Banger addressing Childhood Cancer Advocates and Congressional Leaders

 

IMG_0934

Representatives McCaul and Van Holland

CUREFEST 2014 did an excellent job making sure parents, grandparents, siblings and survivors had several opportunities to engage, socialize and share their stories. It was an emotional time for all of us. We sang Amazing Grace while we lit the White House Gold!

DSC03502

NATIONAL ANGEL QUILT

DSC03514 DSC03527 DSC03503 DSC03519 DSC03528 DSC03529

DSC03576

IMAGINE 800 PEOPLE STANDING BEFORE THE WHITE HOUSE WHILE SINGING AMAZING GRACE…HOW SWEET THE SOUND..

DSC03566 DSC03562 DSC03578

 

ON SUNDAY, WE MET AT THE NATIONAL MALL (BETWEEN CAPITAL HILL AND THE WASHINGTON MEMORIAL) TO SPEND A DAY REMEMBERING AND HONORING OUR CHILDREN THROUGH MUSIC, INSPIRATIONAL SPEECHES, TEARS AND APPLAUSE. I THINK YOU WILL AGREE THAT THE FOLLOWING PHOTOS TELL THE STORY BETTER THAN WORDS.

DSC03629

ALL PARENTS WHO LOST A CHILD WERE GIVEN AN ENVELOPE CONTAINING A LIVE BUTTERFLY TO RELEASE!

SURVIVORS WERE HONORED!

DSC03627 DSC03640 DSC03534DSC03641 DSC03593DSC03646 DSC03648 DSC03654 DSC03657

 

DSC03628

THIS DAD CAME BY HIMSELF TO REMEMBER HIS CHILD.

DSC03682

THE BABERS SHAVED THEIR HEADS TO HONOR OF THEIR GRANDCHILD.

DSC03670

THIS YOUNG LADY LOST HER LEG TO OSTEOSARCOMA

DSC03676

MRS MILLER, WHO LOST HER DAUGHTER GABRIELLA TO CANCER, PROCLAIMS “IT IS NOT OKAY” THAT OUR CHILDREN SHOULD DIE FROM THIS HORRIBLE DISEASE!

DSC03678

SO MANY TEE SHIRTS, SO MANY MESSAGES…

DSC03679

THIS MOM SHAVED HER HEAD TO HONOR HER CHILD, A SURVIVOR!!!

DSC03677

PEOPLE SUPPORTING EACH OTHER

DSC03672

ORGANIZATIONS SHARING IMPORTANT INFORMATION

DSC03658 DSC03610

 

DSC03601

STEVE WITH FELLOW SURVIVOR

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH

 

 

Gold-ribbon

HELLO FRIENDS,

I AM WONDERING IF YOU ARE AWARE THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH?

WE WOULD LIKE YOU TO PAUSE FOR A MOMENT AND JOIN US AS WE HONOR OUR YOUNGEST OF CANCER WARRIORS.

WE HAVE LOST TOO MANY CHILDREN, ADOLESCENTS AND YOUNG ADULTS.

OUR CHILDREN HAVE SUFFERED GREATLY…

WE NEED TO REMIND OUR LEGISLATORS THAT OUR CHILDREN DESERVE THEIR ATTENTION…

WE NEED TO REMIND OUR GENEROUS DONORS ($$$) THAT THEIR MONEY WILL HELP PAY FOR IMPORTANT, LIFE SAVING RESEARCH!

WE NEED TO REMIND EVERYONE THAT WHEN YOUR CHILD IS DIAGNOSED WITH CANCER YOUR LIFE WILL BE FOREVER CHANGED!!!

JOIN US SEPTEMBER 19-21, 2014 AS WE WALK ON WASHINGTON DC FOR CUREFEST TO HONOR AND REMEMBER ALL OUR CHILDHOOD, ADOLESCENT AND YOUNG ADULT CANCER WARRIORS!

FOR MORE INFORMATION VISIT: CUREFESTDC.ORG

unnamed

Where are you now, Rock Hudson?

Where are you now, Rock Hudson?

Originally Posted for Four Square Clobbers Cancer: http://4sqclobberscancer.com/

Thank you to Joe Baber for his assistance in preparing this blog. I couldn’t have done it without his assistance!

RockHudson_edited-1Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well …..

Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required a lifesaving Bone Marrow Transplant, I have learned a great deal about PAYA (Pediatric, Adolescent StevenandAngieand Young Adult) Cancer.

  • I learned that cancer is the leading cause of DEATH (from a disease) in children.
  • I learned that there haven’t been any new drugs developed in over 20 YEARS to treat children with cancer.
  • I learned that the statistics for Adolescent and Young Adult (AYA) cancer survivorship has not improved in twenty years.

I tend to obsess over these issues each and every time I hear about another young person being diagnosed with cancer. I obsess when I meet someone who is fighting for their life from cancer that is not the result of life style behaviors.

So what am I getting at? This morning I had a revelation!

rocktaylor-giant_optI was sitting on the floor with  Steven, who was struggling with immobilizing neuropathic pain, cancer treatment one side effect, and I thought: WE NEED A ROCK HUDSON.        HUH?

Rock Hudson was a handsome movie star during the 1950’s and 60’s. During his youth women loved him! For over 30 years Rock was seen in movies and television. He left the public eye for a few years and then attempted to make a comeback. In the early 1980’s he returned to television to starrockhudson1in Dynasty with Linda Evans. Audiences were shocked at his appearance. What happened to Rock? Was he ill? He looked so gaunt! This isn’t the Rock we remember!

Sadly we later learned that Rock had AIDS. The public was shocked.

Rock Hudson provided a catalyst to the AIDS MOVEMENT. His diagnoses and death was the reality check needed for our society to realize that ANYONE COULD GET AIDS. After his passing, the entertainment industry embraced and used the legacy of Rock Hudson to300.taylor.cm_.32311create awareness about AIDS. One of Rock’s leading ladies of the movie era, Elizabeth Taylor took on the task of creating awareness for this terrible disease. There was a complete and total assault on AIDS in the Media and Entertainment Industry.

Since 1981, 1.7 million people were diagnosed with AIDS. Since 1981, approximately 619,000 have died from AIDS in the United States. Fortunately for AIDS Research, the media and the entertainment industry saw fit to create AIDS awareness which resulted in the development of very effective efforts to fund AIDS research and prevention programs.  Apparently the attention caused by Rock Hudson, and the work of the media and entertainment industry since then were very effective! Today, AIDS is more treatable than ever before, and fewer people are dying each year from this tragic disease.

What does this have to do with Steven and all the other PAYA’s diagnosed with cancer?

Well, our children, adolescents and young adults with cancer have not been so fortunate! We have not experienced a media blitz to raise awareness. Yes, progress has been made for some life threatening cancers, but what about the more rare forms of the disease?

The National Institute of Health/National Cancer Institute (NIH/NCI) budget will provide only $195 million to Childhood Cancer Research (for ages 0-19 years) for 2014.  This amount has decreased for the last several years.  If you consider the effects of sequestration and inflation, you could say childhood cancer research funding is down 30% over 2008!   To put  aids funding in perspective to cancer funding, consider this: While the entire budget for all cancers, adults and children, is $4.9 billion, AIDS research is more than half at 2.9 billion! An estimated 15,529 people with an AIDS diagnosis died in the US during 2010 compared with 569,490 who died of cancer.  Do you see a discrepancy here?

Every year 2,700 children (0 – 19 years old) will die from cancer. That’s 17% of the children diagnosed with cancer. What about the survivors? Do you recall Joe Baber’s report last week? To paraphrase Joe “even when a child reaches the 5-year survival milestone (an arbitrary number), they are still at risk of long term effects…When we talk about “cure rate” it never mentions that more than 90% of those “cured” have serious or life threatening side effects or even secondary cancers caused by the treatment.”

What about AYA (adolescents and young adults’ ages 15 – 39 years) with cancer? Cancer is the leading cause of death (excluding homicide, suicide and unintentional injury) in this age group. In males, besides heart disease, cancer is the leading cause of death. In women it is the leading cause of death  (Bleyer, Viny, & Barr, 2006).

StepUpShineWhere is the Media? Where is the Entertainment Industry? PAYA Cancer shouldn’t be relegated to Special Interest Blogs by heartbroken parents who have lost their children or PAYA Cancer survivors sharing their stories. PAYA Cancer shouldn’t be a sound bite on the evening news that highlights a Walkathon by a few hundred parents and children during the month of September (childhood cancer awareness month) or about a young man or woman bike riding across the country to raise money for a specific cancer. MORE NEEDS TO BE DONE!!!

We appreciate last year’s STAND UP TO CANCER television program highlighting Taylor Swift’s awesome song “Ronan” but MORE NEEDS TO BE DONE!!! After the Stand Up To Cancer Program, did you hear the song “Ronan” played on the radio? Did it make the TOP TEN?

We appreciate all of the wonderful childhood, adolescent and young adult cancer organizations raising awareness and providing support to hundreds of families each year…..BUT MORE NEEDS TO BE DONE!!

We appreciate movies like 50/50 creating some awareness (a rather light hearted attempt at that) of the stresses and fears that a young adult experiences when diagnosed with cancer, BUT MORE NEEDS TO BE DONE.

Where is our ROCK HUDSON???

Is there some way the media and our society can come to an understanding that we parents and family members also grieve each time we lose one of our children to cancer?

The other day, I was reminded of parental pain of loss when I watched the news as a couple grieved over the loss of their child who was murdered at Sandy Hook Elementary School.

How often are parents asked to share their grief over the loss of their child to cancer on national television?

Is the grief of parent who lost their child to cancer any less than those unfortunate families at Sandy Hook? Where is the shock? Where is the disgust?

starprofile_edited-2Who will champion the cause of Pediatric, Adolescent, and Young Adult Cancers? What will it take for the media to dig in and help? How many more children will we lose to Brain Tumors (a childhood cancer that is increasing in frequency every year)? How many teenage boys and girls will lose their limbs or life to a Sarcoma (where treatments haven’t changed in over 30 years)? How many young adult women will die of Breast Cancer (as this age group is more likely to die than any other group)?

Where is our champion? Who else needs to die for the cause?

 

Wellness Project Receives $3000 Grant from the National Philoptochos Society of America!

philoptochos Logo 2014The Steven G AYA Cancer Research Fund would like to thank the National Philoptochos Society of America (www.philoptochos.org) for awarding us with a $3000 Grant. The generous grant will help support the WELLNESS PROJECT being conducted with the Angie Fowler Children, Adolescent and Young Adult Cancer Institute at University Hospitals of Cleveland.

The Wellness Project goal is to educate patients and families about the importance of good nutrition, exercise and relaxation.

Currently we are providing funding for weekly Smoothy Day serving pediatric oncology patients while in treatment.

This new grant will allow us to add another important component to the Wellness Project: to directly meet the needs of older adolescents and young adults. We are working with staff to develop a RELAXATION KIT for AYA’s during treatment. The KIT items will include aromatherapy products (scented products to help with nausia, anxiety or inability to sleep), relaxation CD’s, and reading materials.

There is medical research to support the introduction of Complementary Therapies during Cancer Treatment. Our hope is to increase the availability of these Therapies (such as massages and mindful meditation) considered appropriate for AYA’s during cancer treatment. We will continue to keep you posted on the Wellness Project as it moves forward.

Always know that your contributions to the Steven G AYA Cancer Research Fund go directly to finding ways to help our young cancer warriors win the battle against this horrible disease!!!

Remember
We Won’t Rest Until There is a CURE!

FIGHT! CONQUER!! CURE!!!

 

 

 

 

 

In Memory: Erik Kratky – YA Cancer Warrior

20140314_122635

Erik (middle) with fellow St. Baldrick’s Day Participants (Rainbow nurses and Steven)

20140314_122812

Erik and Steven “posing” for the camera.

photo eric closeup

Erik

I wanted to share some sad news about a young man who lost his battle with Cancer.

Erik Kratky lost his battle two weeks ago.

I didn’t personally know him, but have several photos of him as a result of his participation in the St. Baldrick’s Head Shaving Event at Rainbow, Babies and Children’s Hospital. An annual event that raises awareness and money for Pediatric and Adolescent Cancer Research.

You see, Erik and my son Steven participated in the Head Shaving event to honor the memory of young friends who have lost their battle and to encourage young people currently in treatment.

I have a bunch of photos of that event. Some of Erik and Steven laughing and some of pediatric oncology nurses willing to shave off their hair (and a little vanity) for Pediatric and Adolescent Cancer Research.

Steven had first met Erik in a YA Cancer Focus Group. According to Steven, Erik was deeply concerned for AYA Cancer Patients and wanted to make sure AYA cancer treatment was the best possible to ensure survivorship.

My heart aches over the loss of Erik. I can only imagine the grief his family is experiencing.

I pray for the entire family.

I pray that one day Pediatric and AYA Cancer Research will become a government priority, and that all our YOUNG WARRIORS will be told “there is a cure” and they can look forward to living a long healthy life.

 

 

 

 

#STEPUP: More funding for CHILDHOOD CANCER RESEARCH!!!

stepup-average4#STEPUP – LET’S SUPPORT CHILDHOOD CANCER RESEARCH CAMPAIGN!!!

A coordinated community effort is underway to storm Congress – on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress the message of #StepUp: More Funding for Childhood Cancer Research.

History will be made  when 250+ advocates come to Washington, D.C. for Childhood Cancer Action Days on June 23-24.  We need your help to make sure our voices are heard loud and clear by members of Congress.

There are many ways for you help with this community campaign:

THANKS TO PAC2 FOR ALLOWING SGAYA TO COPY THIS INFORMATION IN ORDER TO SHARE WITH YOU!!!

PAC2 is proud to be part of this groundbreaking coordinated effort, and we thank the many terrific organizations that worked together to make this happen. In the coming week, we’ll take one step in a long journey toward more federal research funding and better treatments for kids with cancer.

For some background information on the funding issues at the heart of this campaign, please see:

Please join in this coordinated community effort as we #StepUp in support of funding for childhood cancer research.

Young Adult Night – Indians Game Outing 6-17-2014

IF YOU ARE A CANCER SURVIVOR AND BETWEEN

THE AGES

OF 18 – 39 YEARS, LISTEN UP!!!

Here is an opportunity to meet individuals who have gone through similar experiences, without the pressure of having to TALK about your experience.

The SGAYA CANCER RESEARCH FUND is a proud to support the NE Ohio LLS Young Adult Cancer Survivors Network Cleveland Indians Outing scheduled for June 17, 2014.

LLS-logo-V-RGB

Please click on this link

 Young Adult Indians Game 6-17-14

for more information.

 

 

 

SPACE IS LIMITED SO RSVP soon to debbie.kendig@lls.org or 216-264-5690. 

WHAT HAPPENS IN VEGAS IS AWESOME!!! By Lauren Mostardi

 

Lauren and Miles

Lauren and Miles

 

On April 23rd, 2014, I boarded an airplane in Cleveland, Ohio, and flew to Las Vegas for the first time in my life.  This was thanks to the financial support of the Steven G. AYA Cancer Research Fund.  The fund’s generous travel scholarship paid for me to attend the OMG!  Stupid Cancer conference for young adult cancer survivors, which was held at the Palms Casino Resort.  The conference is a wonderful event that allows cancer survivors in the 18-40 age range meet, network, and have a good time over a long weekend.  It is so life affirming to meet others that share your life experiences, especially when a major challenge for young adult survivors is the loneliness you often feel, because it seems you are the only one going through what you are.

The conference is a nice blend of official, cancer related events, and free time to explore and enjoy all that Las Vegas has to offer.  The event included an official tour of The Strip, a pool party, dancing on the 55th floor of the Palms, and even pub trivia with your fellow attendees!  There were great speakers and talks on topics like Genomics, being LGBT with cancer, meditation, and managing your anger.  The conference was inclusive and welcoming, and was a great chance to really air your feelings, and feel like you matter.  My favorite event of the entire weekend was the Just For Gals: Nothing is Taboo talk, which included guest speaker Tamika Felder, who is a personal inspirational figure of mind, on both cancer survivorship and body image.  Like the entire conference, this session was patient focused, and emphasized being able to speak freely about issues that can be difficult to talk about, such as fertility, reproduction, body image, family relationships, and friendship.

In addition to meeting some great people, my boyfriend (who attended with me) and I rode the High Roller Observational Ferris Wheel, which just opened in early April 2014.  It gave a perfect view of the Strip, as well as the surrounding red rock and mountain-filled desert.  The Las Vegas Strip is truly a unique experience that must be experienced to be believed.  Only in Vegas can you see the Eiffel tower, the New York Skyline, and an exploding volcano, all within one mile!

I view this experience as a once-in-a-lifetime opportunity that I was given because of the philanthropy of those that run the Steven G. AYA Cancer Research Fund.  I think this is a very worthwhile charitable action on the part of this group.  Research can be scientific to be sure, but it also includes meeting and networking with those that share your experiences.  It was also great to have a representative from Ohio present, to bring even more diversity to the conference.  I am forever grateful to this organization for helping to give me such a wonderful experience.

 

Lauren Mostardi

 

Report from Las Vegas: Stupid Cancer’s OMG! YA Cancer Summit 2014

Exuberant "Get To Know You Session" for NEW ATTENDEES!

Exuberant “Get To Know You Session” for NEW ATTENDEES!

Hi Friends,

I just returned from the OMG YA Cancer Summit 2014…although a bit tired I feel energized by the well orchestrated series of events that took place over the last few days in VEGAS!!!

Young Adult cancer survivors (some currently in treatment) from all of the USA, Canada, and Europe attended this action packed, fun filled, emotionally uplifting, and informative event.

Mathew Zachary, Ali Ward and the entire Stupid Cancer team should be applauded for the fantastic job they did to ensure everyone’s needs were met while attending the YA Cancer Summit.

Here are a few topics covered: Brain Tumor Support Group, Caregiver Support, Advocacy, Anger Management, Nutrition, Media and Survivorship, Insurance, Meditation and Relaxation, Pesticides, and more.

Plus there were Hair and Wig stylists available for anyone who wanted a new look…and also Makeup tips to put your glam on:)

I also had the pleasure of meeting two of the NE Ohio YA Cancer Survivors (Phoebe and Lauren) sent by the SGAYA Cancer Fund and In It Together.

Here are a few photographs of the event…

stupidcancerrecipients

Lauren and Phoebe are center between Angie and Amelia. The gentleman is Lauren’s boyfriend (sorry I forgot your name!!)

 

 

The Art of Survivorship is how you choose to get busy living!!!

The Art of Survivorship is how you choose to get busy living!!!

Even Wonder Woman was warming up for the Walk/Run for YA Cancer!

Even Wonder Woman was warming up for the Walk/Run for YA Cancer!

stupid cancer 4

Makeup artists volunteered their time

stupid cancer 92

A High Energy Event!

stupid cancer 99

Wigs for YA Cancer Patients

Remembering and honoring our YA Cancer Warriors.

stupid cancer 7

Check your self!!

stupid cancer 5

Yes, cancer is stupid.

Warming up for a Walk/Run Event

Warming up for a Walk/Run Event

stupid cancer 93

Lynn smiling with friends Lauren and Phoebe

Bonnie and Mike Lang, Pat Taylor, @cancerfightclub, Amelia and me chilling at our favorite restaurant:)

Bonnie and Mike Lang, Pat Taylor, @cancerfightclub, Amelia and me chilling at our favorite restaurant:)