Author Archive

CRITICAL MASS CONFERENCE 2014 – why we do what we do

I had the pleasure of attending the Critical Mass Conference in Denver two weeks ago. The conference was fantastic!!! There’s nothing like being with a group of like minded people so dedicated to finding better ways to treat and cure AYA Cancer!!

Oncologists, nurses, social scientists and workers all banded together with a common goal: Collaborate to Cure Cancer!!

Many of the conference leaders are YA Cancer survivors who know first hand what it means to be part of a unique group of individuals considered to be “the least likely to survive their cancer.”

Like last year, the Steven G AYA Cancer Research Fund awarded six individuals for their work in either Innovative Scientific Research or Innovative Service and Programs.

Critical Mass Conference 2014, Denver, CO  SGAYA Cancer Poster Session Awardees

Critical Mass Conference 2014, Denver, CO
SGAYA Cancer Poster Session Awardees

 

 

 

 

 

 

 

 

 

 

Their names are below listed as follows:

Innovative Research and Clinical Trials

First Place – $500 Award

Author Name: Deborah Morosini, MD, MSW

(not in photo)

Abstract Title: FoundationOne’s comprehensive genomic profiling of solid tumors from 669 adolescents and young adults reveal a distinct spectrum of targetable genomic alterations.

Second Place – $300 Award

Author Name: Leonard Sender, MD

Abstract Title: A Phase II, Open-Label, Single-Arm, Multicenter, Pharmacokinetic Study of Intramuscular Asparaginase in Young Adults with Acute Lymphoblastic Leukemia or Lymphoblastic Lymphoma

Third Place – $150 Award

Author Name: Melanie Goldfarb, MD, MS FACS

Abstract Title: Thyroid Cancer Specific Quality of Life and Health Utility in Adolescent and Young Adult Thyroid Survivors

Innovative Programs and Services Awards

 First Place Award – $500

Author Name: Laura Mitchell, BA, BScN, MN, CON(C)

Abstract Title: Enhancing Young Adult Cancer Care: the significance of improving access to community programs

Second Place Award – $300

Author Name: Karen Fasciano, Psy.D.

Abstract Title: Development of a web-based support program for caregivers of young adults coping with cancer.

Third Place Award – $150

Author Name: Julie Kinamore

Abstract Title: An Outdoor Adventure Program for Young Adults with Cancer: Positive Effects on Body Image and Psychosocial Functioning

Congratulations to all these very talented individuals!

Last, but not least!!!

I wanted to share an email from one of last years’ recipients.

Dr. Catherine Fiona MacPherson’s  (in photo below) research  study is titled:

 

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Link to the RESEARCH ARTICLE: feasibility acceptability of an iPad app to explore symptom clusters in AYAs with cancer_Pediatr Blood Cancer_2014

 The Computerized Symptom Capture Tool (C-SCAT): A Novel Approach to Exploring Symptoms and Symptom Clusters.

Please read an excerpt from Catherine’s message regarding the SGAYA Fund’s $500 Award impacted her research project:

...follow-up to our conversation regarding the impact of the generous award from the Steven G. AYA Cancer Research Fund which the Consortium to Study Symptoms in Adolescents with Cancer (CS2AC) received at Critical Mass 2013. 

 I have attached the paper published in Pediatric Blood and Cancer this past summer which reports the primary findings of our study evaluating the feasibility and acceptability of a novel iPad application to explore symptoms and symptom clusters in AYAs with cancer.  

The award enabled us to pay a medical illustrator to design Figure 1 which appears on page 3. 

The inclusion of this figure notably enhanced the paper by providing example images of step by step completion of the app screens to complement the text description of the same. The figure enabled us to better convey the innovation and paradigm-shifting potential of the app and generate reader interest in further use and study of it. The paper is important in that it will serve as published preliminary data to support future grant applications for clinical pilot testing of the app’s potential to empower AYAs to gain insight into and communicate their unique symptom experience.  Our award from the Steven G. AYA Cancer Research Fund therefore contributed significantly to moving forward our research agenda to positively impact symptom management for AYAs with cancer.

Again, thank you so very much, on behalf of all of us in CS2AC (cc’d on this email).  Please do not hesitate to let us know if there is ever any way in which we could assist you. Your work is vitally important to advancing research and clinical care to benefit AYAs with cancer and we would be delighted to support it in any way we can to give back in return for the support you have given us.”

-we are working hard to help others

find a better way to treat and cure aya cancer!!!-

fight! conquer!! cure!!! 


SEE YOU JANUARY 24TH, 201

 

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SAVE THE DATE: IT’S TIME TO TAKE A BITE OUT OF AYA CANCER!!!

HELLO EVERYONE, 

WE HOPE YOU WILL BE ABLE TO JOIN US ON

SATURDAY, JANUARY 24TH, 2015.

YOUR $40 TICKET

WILL BUY YOU AN EVENING OF

LIVE MUSIC, RAFFLES, SILENT AUCTIONS,

DINNER WITH WINE/BEER/SODA,

COFFEE AND GREEK DESSERTS,

AND AN OPPORTUNITY TO LEARN HOW TO DANCE GREEK!!!

GUEST SPEAKER WILL BE ROBERT PURGERT

(FORMER CANCER WARRIOR AND FUTURE PEDIATRIC ONCOLOGIST)

SO HELP US..

-SUPPORT OUR NEW WELLNESS PROGRAM-

 -SPA PACKAGES FOR YOUNG ADULT CANCER PATIENTS-

-AYA CANCER RESEARCH FELLOWSHIPS-

fundraiserflyer2014-2015-SOCIAL SUPPORT FOR AYA CANCER WARRIORS-

SO…

WE HATE CANCER – BUT WE LOVE YOU!

 

FOR MORE INFORMATION PLEASE CONTACT ANGIE:

ANGIE@FIGHTCONQUERCURE.COM

TO PURCHASE YOUR TICKETS ONLINE

VISIT OUR WEBSITE 

WWW.FIGHTCONQUERCURE.ORG

2014 Adolescent and Young Adult Cancer Symposium

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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.

 

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CAC2 President Vickie Banger addressing Childhood Cancer Advocates and Congressional Leaders

 

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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!

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NATIONAL ANGEL QUILT

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

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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.

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

SURVIVORS WERE HONORED!

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THIS DAD CAME BY HIMSELF TO REMEMBER HIS CHILD.

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THE BABERS SHAVED THEIR HEADS TO HONOR OF THEIR GRANDCHILD.

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THIS YOUNG LADY LOST HER LEG TO OSTEOSARCOMA

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

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SO MANY TEE SHIRTS, SO MANY MESSAGES…

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

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PEOPLE SUPPORTING EACH OTHER

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ORGANIZATIONS SHARING IMPORTANT INFORMATION

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STEVE WITH FELLOW SURVIVOR

Support PAYA Cancer Research. By Robert Purgert (Young Cancer Warrior)

SeptePurgertmber is a special time of year that provides us with the unique opportunity to reflect on the impact that pediatric, adolescent, and young adult (PAYA) cancer has on all of us. As a society, there tends to be a larger focus on adult cancers, due to the volume and publicity associated with them. What PAYA cancer cases lack in volume, however, they more than make up for in the impact that they have on the lives of the individuals going through the struggle, as well as the lives of those around them. However, there are major improvements in PAYA research that can be made which might make all the difference going forward.
As a survivor of cancer myself, I know the reality all too well. I was diagnosed with AML Leukemia on October 2, 2008 – at the time I was 14 years old and had just started my freshman year of high school. As if trying to find new friends and fit in wasn’t hard enough, I had to deal with the stresses and uncertainty that came along with cancer as well. Life was certainly hard in these times, not only for myself, but also for my parents and others around me. My parents found ways to be at the hospital as much as possible while also balancing work and three other children; how they did it, I will never know. With the help and support of many, we got through our tough time; however, it is a situation that I would never wish on anyone, and that is why it is absolutely imperative that we continue to work towards increased funding and research for PAYA cancer.

I know the personal impact of PAYA cancer, but I also know the impact that PAYA research has on outcomes. The preferential treatment for me would have been a bone marrow transplant, however there was no match for me in the registry, and so I was forced to go ahead with strictly chemotherapy for my treatment. Since this is not the traditional or preferred method, my doctors offered that I try an extra experimental chemotherapy on top of the standard regiment. For me, the drugs were incredibly successful, and I was in remission after just one round of treatment – making me a firm believer in the power of research and experimental treatments.

Since PAYA cancer research is what helped me to survive, it has inspired me to take up the challenge of giving back to the cause, so that I can help others who might be in the unfortunate situation that I was once in. Thanks to the Steven G Foundation, I had the opportunity to do research on pediatric Medulloblastoma tumors in the lab of Dr. Alex Huang for the past two summers. It was truly an incredible experience, and to know that I was helping to give back to a cause that had given so much to me was very rewarding.

Now, I realize that not everyone out there has a personal tie with PAYA cancer, so you might be thinking, what’s my motivation? Why should I help the cause? Well, I very truly hope that no one reading this ever has to have any interaction with PAYA cancer. However, at this point, the best that we can do is hope. Why not guarantee that you will never have to be afraid of PAYA cancer? If we all work together, one day, we will be able to find a way to know cancer so well that it won’t be any more concerning than providing antibiotics for a common cold. That’s what I’m working toward. I work toward a day when parents will never have to live through the torment of watching their sick child pass away with nothing that can be done for them. I want to put an end to cancer. I hope that I can convince others to have the same goal.

A cure certainly isn’t going to happen overnight. The problem is complex – more complex than almost any other within the medical field. Also, PAYA is at a definite financial disadvantage. I mentioned earlier that adult cancers receive much more attention. Well, they also receive much more private and government funding for research. However, we should not be discouraged. There are still many factors on our side. The resilience of young people is something that can never be underestimated. Their hope in the future provides them with the attitude to persevere, even in the toughest circumstances. All that we need to do is to try our best to help with that fight. If the funding for PAYA cancer research could be brought up to be even half of what is used on adult cancers, the results could be life-changing – literally. Also, we cannot forget the importance of those who do the research. Without them, the goal can never be accomplished. This issue is too big to be solved by just one person; we need more researchers out there. To me, they are some of the most underappreciated heroes in our society. If we are able to make researchers the heroes of our society, then the best and brightest can be attracted to the field, thus helping the research to progress faster and further than ever.
Everyone is capable of making a difference. And it is definitely going to take all the help we can get if we want to put and end to PAYA cancers. I know I’m in, I hope that you will be too.

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH

 

 

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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

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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

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

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Erik and Steven “posing” for the camera.

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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.