Research Findings

Washington DC = WOW! The Raulerson’s Advocate For Childhood Cancer

Meet the Raulerson’s!

Thanks to our donors Micheal, Tammy and Tacey were able to attend the Alliance for Childhood Cancer’s Advocacy Day this past April!

It is people like the Raulerson’s who continue to share the responsibility of making sure our legislators know about the serious impact childhood cancer has on youngsters and their families.

It goes without saying that good solid Research and long term Survivorship Programs are needed…

And now Tammy (mom) Raulerson:

Washington, D.C.=WOW!

As usual, our trip began with its our normal hiccups and bumps.  Also, as usual, God had it all worked out.

Our first flight got cancelled and we were rescheduled to fly out of Houston in the evening.  That meant us arriving in D.C. very late at night.  In fact, we were so late the hotel shuttle had stopped running.

We left Houston in 80° weather and arrived in DC to 47° weather!  Thankfully, I had packed our jackets and travel blankets in our carryon bags!

As most of you know, our family rarely goes anywhere without making new friends.  Having been a teacher of world geography, I am curious about learning more about people when I hear accents.  Of our 5 cab rides while in DC, we learned more about Afghanistan, Ethiopia, Laos and Sierra Leone.  It was fun to make conversation with the drivers.

Even though we got very little sleep due to such a late arrival, our Tuesday training was great!  It was hard to settle down and sleep because we knew 2 of our very best friends were in the room next to us.  They came to represent South Carolina.  It had been 2 years since we had seen each other, so we were so excited to be reunited Tuesday morning!!

Not only did we meet important leaders in childhood cancer awareness and research, we also heard from vital leaders in health care organizations.  We especially enjoyed getting to know so many from other states and from Texas!  Not that I am biased or anything, but our contingency from Texas was exceptional!

One of the ladies and I got to talking about where we were from.  She grew up in Dallas and still lives there.  However, in our discussion we realized she was born in MY hometown!  Some of her family still lives there.  As we were talking, I realized I know several members of her family.  What a small world!

One of the members of our team was a 12-year-old and his dad from Houston.  As we talked, he and Tacey realized they had the same oncologist and had several common friends.  Another member was a senior biology student at A&M.  We also had friends in common with him.  Again, it felt like a small world.

Training was so informative, interesting and important.  We were updated on all the imperative points and notes we needed to share with the legislators.

After traveling and getting to the hotel in the early morning hours, the day began to be a little long and overwhelming for Tacey during lunch.  She needed a break and went up to the room to rest.  Just as I was about to text her to come back to the training, she sent me a text letting me know she was headed back down.

This may not seem like much to a lot of you, but to me it was huge.  In a very unfamiliar environment, a large city full of strangers, etc., Tacey took the initiative to leave the hotel room, find the elevator and return to training without us assisting her.  She is very independent and self-reliant, but being in an environment like this can be unsettling to most! [Editor’s Note: Tacey has a visual impairment.]

After a long day of training, we and other families were treated to dinner by St. Baldrick’s Foundation.  Tacey has been an ambassador/honored child for St. Baldrick’s since 2007.  It is an amazing foundation.

Wednesday was our big day on Capitol Hill.  It started early with the bus ride to the Hill and a group photo.  We took a few minutes to take small group photos, too.  Then, we took off to our first meeting.

While waiting to get through security at one of the building of House offices, we saw Secret Service rush to set up a perimeter as Secretary of State Pompeo exited a car and entered the building.  Later in the day, we were asked to step aside in a hallway of another House building.  As we moved to the side of the hallway, we saw security escorting the Joint Chiefs of Staff.  Yes, these things were surreal.  They also happen so quickly you don’t think to grab your phone to snap photos!

Our day was long.  We walked over 5 miles between House and Senate buildings.  At one point, Tacey walked barefoot from one of the Senate buildings to one of the House buildings.  We were rushing to get to our next meeting, so once again I didn’t get a photo!  LOL

Thankfully, we had a lobbyist from DC helping us get from one place to another.  At one point, I think we took some short-cuts in the tunnels under the House buildings that weren’t necessarily open to the public!  LOL

We met with legislative leaders from 5 of our Texas congressmen’s offices.  Everyone we met was very gracious, listened and gave us great hope for the future of childhood cancer research.

Hearing Tacey and the other 2 childhood cancer survivors in our group share their stories with these critical people was so moving for all of us, but especially for those we were meeting.  We also had 2 moms who shared the stories of the passing of their children from childhood cancer and its complications.  One particular story brought my emotions to the surface as I realized we had been in the hospital and on the cancer floor the day the young girl passed.  I vividly remember praying for the family at the time!

Being part of this type of advocacy and awareness was energizing, inspiring and empowering!  It was an incredible experience we will never forget!  It was also something we want to continue!

We wrapped up a successful day with pizza in the hotel room with our friends.  It is a good thing it was in the room closest to the elevators and our room on the other side since we laughed and talked and laughed until after midnight!

We had plans to visit the Holocaust Museum and the National Zoo the next day, but Tacey’s health decided to give us a scare in the middle of the night.  Everything turned out to be okay, but our plans had to be postponed until the next time we get to travel to DC.

It is hard to put into words the true effect of the trip on our family.  It was surreal, empowering, encouraging, inspiring and so much more.  We are so thankful we made the trip and participated in something so monumental!

Without the very generous help from family, friends and cancer organizations this trip would not have been possible.  Itis only because of so many people’s help it happened.

Just to remind everyone of God’s hand in everything… We had some emergency issues come up the week before we left.  Those emergencies used all of our savings and what we had set aside in case our expenses were over what we estimated.  We had a debit card with our money for food and other incidentals.  We returned home with $0.61 on that card!  As always, God was in control!

AYA? What does THAT mean?

AYA?


YOU MAY BE WONDERING WHY ON EARTH I AM ASKING SUCH A QUESTION.

WHAT IS AYA?

IS THE WORD PRONOUNCED “AHYA”? …NOPE.

AYA MEANS FOR ADOLESCENT AND YOUNG ADULT. 

AYA REPRESENTS A POPULATION OF INDIVIDUALS FROM 15 YRS TO 40 YRS OLD.

AYA CANCER REPRESENTS A POPULATION OF INDIVIDUALS STRICKEN WITH A TYPE OF CANCER THAT IS OFTEN VERY AGGRESSIVE, LIFE THREATENING AND LIFE ALTERING.

AYA CANCER REPRESENTS 70,000 YOUNG PEOPLE THAT ARE DIAGNOSED EVERY YEAR HERE IN THE USA! 

AYA CANCER OFTEN MEANS THAT THESE YOUNG PEOPLE GET THE RAREST CANCERS AND THE MOST DIFFICULT TO TREAT AND CURE.

AYA CANCER SURVIVORS OFTEN ARE AFFLICTED WITH SECONDARY EFFECTS THAT WILL ALTER THE COURSE OF THEIR LIFE AND PRODUCTIVITY IN OUR SOCIETY.

WHAT CAN YOU DO ABOUT IT?

HELP US GET THE WORD OUT!

SUPPORT OUR FOUNDATION!

AS WE REACH OUT INTO THE COMMUNITY

AND HELP OUR YOUNG WARRIORS THROUGH

EDUCATION, ADVOCACY AND RESEARCH!

-REMEMBER-

WE WILL NOT REST UNTIL THERE IS A CURE!

FIGHT!

CONQUER!

CURE!!!

 

PS.

THIS WEEK IS AYA CANCER AWARENESS WEEK.

#FIGHTCONQUERCURE

 

Childhood Cancer Researchers Receive Award from Steven G Fund!

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CAC2 CONFERENCE Speakers and Participants

CAC2 Pediatric Cancer Research Conference – 2016

“From Bench to Bedside and Beyond:

Uniting the childhood cancer community

in a collaborative forum to advance research for childhood cancers”

Cold Spring Harbor Laboratory, Long Island, NY

October 30 – November 2, 2016

The Steven G AYA Cancer Research Fund was honored to award $500 to the following scientists for their work in Childhood Cancer Research:

Angela Waanders (center) from Children's Hospital of Philadelphia. Research Title: Cavatica: empowering research with a pediatric genomic cloud.

Angela Waanders, M.D., M.P.H., Assistant Professor, NeuroOncology Program (in center) from Children’s Hospital of Philadelphia. Research Title: Cavatica: empowering research with a pediatric genomic cloud.

 

Sunitha Rangaraju,Ph.D Precision Medicine Liaison Global Medial & Diagnostic Affairs for IGNYTA. Research Title: Pediatric phas 1/1b dose-finding trial of entrectinib with expansion into patients with primary brain tumors, neuroblastoma, NTRK, ROS1, or ALK fusions.

Sunitha Rangaraju,Ph.D Precision Medicine Liaison Global Medial & Diagnostic Affairs for IGNYTA. Research Title: Pediatric phase 1/1b dose-finding trial of entrectinib with expansion into patients with primary brain tumors, neuroblastoma, NTRK, ROS1, or ALK fusions.

 

 

 

 

 

 

 

 

 

FIGHT! CONQUER! CURE!!!

Critical Mass Research Poster Awardees

Each year Critical Mass:YA Cancer Alliance, holds an important conference bringing together stakeholders in the field of YA Cancer. Researchers, doctors, nurses, non-profit administrators, survivors and caregivers come together to learn from each other. This year the conference was held in Chicago.

As a Critical Mass partner, and strong advocate for YA Cancer Research, our foundation annually awards researchers in two categories: Innovative Research and Clinical Trials and Innovative Programs and Services. The top three research posters are selected within each category and given a cash award.

We strongly believe that good research is an important step towards finding the best way to cure and treat cancer. FIGHT CONQUER CURE!!

Below are the names of the individuals awarded at the Critical Mass Conference 2015.

Innovative Research                                    Innovative Programs

First Place $500        DEBORAH MOROSINI,MD                       MEGAN BIANCHETTI, MSW

Second Place $300    THERESA KEEGAN, PH.D                         KATHLEEN VILLA, PH.D

Third Place $150        JEANNE ERICKSON, PH.D                       MARIA CABLE, RN

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MARIA CABLE RN Title: “Just In Case”: the Fertility information needs of teenagers and young adults with cancer.

 

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MEGAN BIANCHETTI, MSW Title: Distress in AYAs with Cancer: Components and Covariates

 

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THERESA KEEGAN, PH.D Title: Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status: a population based-study in California, 2001-2011

 

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JAMES L. BAKER PHARM.D (for Kathleen Villa) Title: A Modeling Analysis of the Risks and Benefits of a Pediatric-Inspired Protocol Compared with a Hyper-CVAD Protocol in the Treatment of Adolescents and Young Adults with Philadelphia-Negative Acute Lymphoblastic Leukemia

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Jeanne Erickson, Ph.D. Title: The Pain Experience of Hospitalized Young Adults with Cancer

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MARK BAILEY PH.D. AND VINCENT MILLER MD (for Deborah Morosini) Title: Comprehensive genomic profiling of sarcomas from 203 adolescents and young adults reveals a distinct spectrum of targetable genomic alterations.

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PAT TAYLOR: Advocate, Parent, and Friend Organization: 3 LITTLE BIRDS 4 LIFE

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CHRISTABEL CHEUNG, MSW: Researcher and Survivor and new friend:) AND HER THERAPY DOG CALVIN.

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HERNAN BARANGAN: Movie Producer, Artist and Survivor (Check out his work on YouTube) Organization: TEEN CANCER AMERICA

EVIDENCED BASED CARE FOR AYA’S – AMELIA BAFFA

CONGRATULATIONS TO AMELIA BAFFA, CLINICAL ONCOLOGY NURSE, AYA PATIENT NAVIGATOR AT RAINBOW, BABIES & CHIMG_5577ILDRENS’ HOSPITAL AND SEIDMAN CANCER CENTER FOR HER CONTINUED EFFORTS TO IMPROVE CARE TO ADOLESCENTS AND YOUNG ADULT CANCER PATIENTS,

AMELIA RESEARCH POSTER WAS PRESENTED AT THE ACADEMY OF ONCOLOGY NURSE
NAVIGATOR CONFERENCE IN ATLANTA, GEORGIA LAST WEEK.

OVER 700 ONCOLOGY NURSES ATTENDED THE CONFERENCE, AND MOST OF THEM WERE WORKING VERY HARD TO RAISE AWARENESS OF THE NEEDS OF AYA CANCER PATIENTS DURING AND AFTER TREATMENTS.

THANK YOU AMELIA FOR YOUR DEDICATED WORK!!!

FIGHT! CONQUER! CURE!!!

GO FOR THE GOLD – CHILDHOOD CANCER AWARENESS MONTH

FRIENDS

PLEASE REMEMBER THAT SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH. 

PLEASE REMEMBER THAT CHILDHOOD CANCER SURVIVORS BECOME ADOLESCENTS AND YOUNG ADULTS WITH SECONDARY ILLNESSES 

PLEASE REMEMBER THAT EACH DAY PARENTS ARE MOURNING THE LOSS OF THEIR CHILD AS A RESULT OF CANCER.

PLEASE REMEMBER THAT PEDIATRIC CANCER IS THE #1 DISEASE RELATED KILLER OF KIDS IN THE UNITED STATES.

KNOW THAT THE NIH (NATIONAL INSTITUTE OF HEALTH – WHERE YOUR TAX DOLLARS GO) GETS $30 BILLION FOR RESEARCH ANNUALLY, YET CHILDHOOD CANCER RESEARCH GETS LESS THAN $200 MILLION. THE DEADLIEST CHILDHOOD CANCERS GET LITTLE OR NO FUNDING.

IT’S NOT A MATTER OF MORE MONEY, IT’S A MATTER OF PRIORITIES.ribbon

 

 

 

 

WE MUST MAKE CHILDHOOD CANCER RESEARCH A NATIONAL PRIORITY AND GIVE KIDS PEDIATRIC CURES, TREATMENTS, PROTOCOLS AND HOPE!!!

fight! conquer! CURE!!!

New Cancer Publication Supported by SGAYA Cancer Fund

WE ARE PLEASED TO ANNOUNCE THAT RESEARCHERS IN HUANG LAB AT THE CASE MEDICAL SCHOOL HAVE PUBLISHED AN ARTICLE

TITLED

“FOCAL TRANSIENT CNS VESSEL LEAK PROVIDES A TISSUE NICHE FOR SEQUENTIAL IMMUNE CELL ACCUMULATION DURING THE ASYMPTOMATIC PHASE OF EAE INDUCTION.”

Purgert

Robert Purgert

Dr. Askew

Dr. David Askew

Two of our Scholarship recipients, Dr. David Askew and Robert Purgert, assisted in the research study and article development.

According to Dr. Alex Huang results of the study help researchers better understand…

1) how immune cells cross the blood-brain barrier during the development of autoimmune diseases such as multiple sclerosis can be a knowledge base for improving anti-tumor immune cells to cross the same blood brain barrier when used to fight cancers in the brain.
And,
2) how immune cells (lymphocytes such as T cells and B cells) cross the blood brain barrier will also help us understand and prevent leukemia cells crossing the blood brain barrier from the blood to CNS metastasis.
And, of course, there is always the curiosity of how things actually work in this wonderful body that God gives to each of us!

Below please find the Bibliography details and the link ( Barkauskas Exp Neurol 2015 ) to the article.

Article title: Focal transient CNS vessel leak provides a tissue niche for sequential immune cell accumulation during the asymptomatic phase of EAE induction
Reference: YEXNR11938
Journal title: Experimental Neurology
Corresponding author: Dr. Alex Yee-Chen Huang
First author: Dr. Deborah S. Barkauskas
Final version published online: 28-FEB-2015
Full bibliographic details: Experimental Neurology  (2015), pp. 74-85
DOI information: 10.1016/j.expneurol.2015.02.018

 

fight conquer cure

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 

 

 

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

 

Are We Ever Cancer Free?

When Steven was diagnosed with a secondary cancer, (AML), and then had a Bone Marrow Transplant I often wondered if he would be free of cancer. We were told that time would tell and just to enjoy the moment.

Time has passed.

This year, happily, Steve was told that he is five years out from his Bone Marrow Transplant: AND THAT IS A VERY GOOD THING!!! Good Bye Cancer!!!

But ARE WE EVER CANCER FREE?

Like many childhood, adolescent and young adult cancer survivors Steve struggles with secondary effects that cause unexplained aches and pains, and chronic fatigue-like symptoms. There is always the fear that something new will pop up and change his life forever. We just don’t know.

I am not sharing this information to make you feel sorry for Steven but to remind you that survivorship often has a price.

Please take time out of your busy schedule to write to your congressmen and senators about how important it is to support Childhood Adolescent and Young Adult Cancer Research!

Tell them they need to support the Carolyn Pryce Walker Childhood Reauthorization Act. Read more here: cac2.org/legislation/caroline-pryce-walker-conquer-childhood-cancer-reauthorization-act-h-r-2607s-1251/

Tell them they need to support  the Childhood Cancer Survivors Quality of Life Act. Read more here: cac2.org/legislation/childhood-cancer-survivors-quality-of-life-act-h-r-2058s-1247/

Tell them they need to stop the National Cancer Institute from cutting funding to Childhood Cancer Research. Read more here: cac2.org/legislation/funding-for-the-national-cancer-institute-nci/

Tell them to support the Patients’ Access to Treatment Act. Read more here: http://cac2.org/legislation/patients-access-to-treatments-act-h-r-460/ This will  sure insurers charge no more for specialty drugs than they currently charge for non-specialty tier brand drugs.

I am asking you as a parent, caregiver and advocate to support these Legislations that impact our children’s future. Your future.

Thank You,

Angie

LET’S FIND A BETTER WAY TO                                                                                   TREAT AND CURE CANCER!!!

 

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