legislation

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

 

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!!!

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

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.

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…

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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!

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Makeup artists volunteered their time

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A High Energy Event!

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Wigs for YA Cancer Patients

Remembering and honoring our YA Cancer Warriors.

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Check your self!!

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Yes, cancer is stupid.

Warming up for a Walk/Run Event

Warming up for a Walk/Run Event

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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:)

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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Research! Research! Research! = $$$$$$

This blog reviews the recently passed Kids First Research Act of 2013 and the impact of limited research dollars on places like Huang lab.

 

The Kids First Research Act of 2013 (H.R. 2019)

Description: The presidential candidates do not use the funds set aside from the income tax option because they find it to be too restrictive for campaigning. HR2019 Gabriella Miller Kids First Research Act of 2013 eliminates taxpayer financing of presidential campaigns and reprograms the savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health.

HR2019 Gabriella Miller Kids First Research Act calls for $126 million over a ten year period to increase research for all types of kid’s diseases, cancer, autism, diabetes, and more. For details visit: http://www.gpo.gov/fdsys/pkg/BILLS-113hr2019ih/pdf/BILLS-113hr2019ih.pdf

Kids First Research Act of 2013 – Amends the Internal Revenue Code to terminate: (1) the taxpayer election to designate $3 of income tax liability for financing of presidential election campaigns, (2) the Presidential Election Campaign Fund, and (3) the Presidential Primary Matching Payment Account.

Redesignates the Presidential Election Campaign Fund as the 10-Year Pediatric Research Initiative Fund. Makes amounts in the Fund available only for allocation to national research institutes and national centers through the Common Fund for making grants for pediatric research under this Act. Requires deposit into the Treasury general fund of any amounts in the Pediatric Research Initiative Fund that remain unobligated on October 1, 2024.

For more information visit: http://4sqclobberscancer.com/on-capital-hill/hr2019/ for more about the Bill and its History.

Remember:

One in every 330 children in the United States develops cancer before the age of nineteen.

Each school day, enough children are diagnosed with cancer to empty two classrooms.

Depending on the type of cancer and the development upon diagnosis, approximately 2,300 children will die from cancer in any given year.

The number of children diagnosed with cancer in the U.S. each year puts more potential years of life at risk than any single type of adult cancer.

Cancer remains the number one disease killer of America’s children.

There are more than 360,000 childhood cancer survivors of all ages in the United States.

Unfortunately, 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.

Survivors are at significant risk for secondary cancers later in life.

Current cancer treatments can affect a child’s growth, fertility, and endocrine system.

Child survivors may be permanently immunologically suppressed.

Radiation therapy to a child’s brain can significantly damage cognitive function, especially if given at a very young age.

While currently there is very little in terms of “safe and effective” cures for any particular type of childhood cancer, the underlying genetics of the disease and recent research breakthroughs make such treatments foreseeable.

Thank your congressional leaders for supporting the KIDS FIRST RESEARCH ACT OF 2013 (H.R. 2019)

 

SO…HOW DOES FUNDING REACH PLACES LIKE HUANG LAB??

 

With the passage of the Kids First Research Act of 2013 it is appropriate to provide you with an example of how the shortage of funding and grants from places like the National Institute of Health and the National Cancer Institute impact local research efforts to conquer cancer. The example is through our collegues at Dr. Alex Huang’s Laboratory at Case Western Reserve Medical School in Cleveland, Ohio.

We (board members and high school students Tim Chrisman and Cassis Packis) visited the Lab on Tuesday, December 3rd.

Dr Huang graciously greeted us and gave a tour around the Research Laboratory where important  PAYA Cancer Research is being conducted.

The dedicated researchers are working on several projects that focus on finding ways to stop cancer in its tracks! Not being a researcher I cannot do justice to the important work they are doing. However, by reading previous blogs you will find some excellent descriptions of the successes in the war on cancer. In addition to our visit we learned about the time and committment required by oncology researchers. In addition we learned about the limited funding and ever depleting numbers of medical students and scientistS who select not to enter the field of oncology research as a result of limited funding.

I found it disturbing to learn that PAYA Oncology Researchers are the LEAST awarded among researchers. And, their salaries are dependent on contributions from private donors and research grants.  In addition, these grants are being awarded less frequently.

In the past, funding from institutions like the National Institutes of Health and National Cancer Institute were awarded to 1 out of 6 applicants. Today, however,  these same institutions are only award 1 out of 16 applicants! Sadly, there are less and less resources available. It is very disheartening to know that the NIH and NCI does not prioritize PAYA cancer at the top of their funding agenda.

Contrary to public opinion, Huang Lab does not receive financial support from local hospitals.

Huang Lab does receive important funding from generous non-profit organizations (see HuangLab.com for more information).

Grant proposals must be written two years in advance in order to secure annual funding for staff and supplies.

FINDING BETTER WAYS TO  TREAT AND CURE CANCER requires much administrative work, dedication, and  highly educated individuals willing to sacrifice  personal and family time as well as monetary gain…NEED I SAY MORE?

SO FRIENDS, please continue to share our blogs, write to Congressional Leaders to keep the funding coming, and, like us,

DO NOT REST UNTIL THERE IS A CURE!!!!!

FIGHT!!! CONQUER!!! CURE!!!

Huang Lab Team and Friends

Huang Lab Team and Friends

 

Dr. Huang leading a discussion about the many research projects begin conducted in the laboratory.

Dr. Huang leading a discussion about the many research projects begin conducted in the laboratory.

 

 

 

 

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