Events

WE ARE READY FOR YOU: TAKE A BITE OUT OF CANCER IS ON!!!

WE HAVE A FUN FILLED EVENING PLANNED SO I HOPE YOU CA2015 auction promorN JOIN US.

LET’S FACE IT, WHERE CAN YOU GO, PAY $40 AND HAVE DINNER, WINE, BEER or SODA, COFFEE AND GREEK DESSERTS…PLUS MUSIC, DANCING, VISIT WITH FRIENDS,…AND HAVE AN OPPORTUNITY TO WIN SOME FABULOUS PRIZES???

WAIT UNTIL YOU SEE OUR AUCTION ITEMS!

HERE ARE A SAMPLE OF ITEMS WE ARE AUCTIONING OFF: VACATION DESTINATIONS, LOGE SEATING, JEWELRY, AUTOGRAPHED FOOTBALLS, BASEBALLS, AND BASKETBALLS ALL FROM CLEVELAND!!!  HAIR AND SPA TREATMENTS, ART WORK, GIFT CARDS TO A NIGHT ON THE TOWN, YOGA, PERSONAL TRAINERS, ICE CREAM, GOLF, THEATER TICKETS,  COSMETICS TO BEAUTIFY AND MAKE YOU LOOK YOUNGER:)

SO JOIN US THIS SATURDAY, JANUARY 24th, 2015.

7 PM – 11:30 PM

 ST. DEMETRIOS CULTURAL CENTER

22909 CENTER RIDGE ROAD

ROCKY RIVER, OHIO 44116.

ALL PROCEEDS GO TO PAYA* CANCER RESEARCH, FUTURE PAYA CANCER RESEARCHERS, PAYA CANCER PATIENTS AND THEIR FAMILIES.

WE ARE A VOLUNTEER ORGANIZATION SO PLEASE JOIN US THIS SATURDAY!

QUESTIONS? CONTACT ANGIE AT: INFO@FIGHTCONQUERCURE.COM.

ORDER TICKETS ON-LINE…ON OUR WEBSITE: FIGHTCONQUERCURE.ORG

EACH YEAR 70K YOUNG ADULTS ARE DIAGNOSED WITH CANCER.

EVERY DAY 23 CHILDREN UNDER 18 YRS ARE DIAGNOSED WITH CANCER.

AREN’T YOU TIRED OF HEARING THESE HORRID STATISTICS?

PLEASE HELP US AS WE FIGHT! CONQUER! CURE!! CANCER!!!

*PAYA  cancer patients = pediatric, adolescent, and young adults = too many young people suffering = we need better research to treat and cure!

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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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

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?

 

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.

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.

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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

 

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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