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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.

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

 

Lauren and Miles

Lauren and Miles

 

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

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

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

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

 

Lauren Mostardi

 

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

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

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

Hi Friends,

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

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

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

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

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

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

Here are a few photographs of the event…

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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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EARTHFARE and SGAYA Partners for WELLNESS!

Patricia O'Donnell, Community Relations Coordinator for EarthFare Supermarket in Fairview Park, Ohio.

Patricia O’Donnell, Community Relations Coordinator

EarthFare Supermarket, Fairview Park, Ohio

Thank you EarthFare Supermarket for joining forces with the SGAYA Cancer Research Fund to provide Healthy Foods to Pediatric, Adolescent and Young Adult Cancer Patients and their Families.

Research has shown that PAYA Cancer Patients have a better chance of surviving their cancer and remaining healthy if they are well nourished. This means that the majority of their meals should be fresh vegetables, legumes and fruits!!

 

Part of our mission includes helping  patients survive their cancer through education.  You can imagine our satisfaction knowing that dads and moms, as well as young patients, are enjoying refreshing smoothies. 

This past Friday was Green Smoothie day, in honor of St. Patrick’s Day. 

Stephanie Jordan, Child life Worker, whipped up Green Smoothies that contained fresh pineapple, bananas, spinach, coconut water, and yogurt. 

Everyone (parents and children) agreed that despite the undesirable greenish hue of the beverage…it was quite tasty!!! One dad was reluctant…but after he took a sip…well what can I say…he really enjoyed the healthy drink!

Smoothie Fridays not only provide a healthy introduction to refreshing beverages, but a welcomed distraction to the often stressful days parents and children encounter on Rainbow 2.

Let’s face it CANCER STINKS!

BUT… One adolescent teen stated “wow I love these fruits!!! I am going to order fresh fruit everyday!!!”…when I asked her if I could quote her she said “SURE!!!”

AH, SUCH GRATIFICATION!!!

You can expect to hear more about our WELLNESS PROGRAM in the future. In the meantime, know that every Friday something HEALTHY is happening courtesy of EarthFare and the Steven G AYA Cancer Research Fund. 

FIGHT! CONQUER! CURE!!!

Stupid Cancer’s OMG It’s Cancer Conference 2014

Hello Friends,

We are happy to announce that the SGAYA Cancer Research Fund will be sending a qualified applicant to the OMG 2014 Conference.

OMG 2014 Conference is an annual event sponsored by

Stupid Cancer

AKA “i’m too young for this! ”

Stupid Cancer, a 501(c)3 non-profit organization, is the dominant healthcare brand for millions affected by young adult cancer.

I am a huge fan of Stupid Cancer because of the genuine commitment to serving Young Adult Cancer Survivors through Social Media Advocacy work (and more). I urge you to check out their website to learn more about Stupid Cancer!

Visit them at stupidcancer.org 

OMG 2014 Conference info:

The conference will take place in Vegas on April 24 – 27, 2014.

If you are a Young Adult Cancer Survivor and are thinking about attending this fabulous conference please visit this link:

The link for the submission form is: http://stpdcn.cr/SGAYAPSF

For more information upload the flyer here (this might take an extra step): patient scholarship flyer

As a Caregiver and YA Cancer Advocate I am looking forward to attending this conference.

I hope to see you in Vegas on April 24!!!

Angie

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Mesothelioma and The Family

Our Friends from The Pleural Mesothelioma Center asked if we would be willing to share information about Pleural Mesothelioma. This type of cancer is not common among children and young adults, however, when one member of the family has been exposed to asbestos the rest of the family (including children) are at risk.

Please take a moment to read the article and feel free to contact them at

PleuralMesothelioma.com for questions.

Thank you.

Angie

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The Effect of a Mesothelioma Diagnosis on Your Family

Receiving a mesothelioma diagnosis can come with a string of emotions, and it will be a difficult and confusing time for family and loved ones, especially teens and young adults.

Mesothelioma is a rare, asbestos-related cancer that develops in the thin lining of the lungs, heart or abdominal cavity and is primarily caused by the persistent inhalation of asbestos fibers. These fibers can become lodged in the body, causing a tumor to develop decades after the initial exposure to asbestos.

Anyone who has been exposed to asbestos is at risk for developing mesothelioma or related conditions. Teens and young adults are at low risk if they live in a home or attend a school that was built before the 1980s, which may contain asbestos materials; however, men between the ages of 50 and 70 are most likely to develop mesothelioma from occupational exposure.

Family members of workers who are exposed on the job are also at risk, as asbestos fibers can be carried home on clothing or the skin, or in the hair.

Mesothelioma is an aggressive type of cancer with an unfavorable prognosis and is often associated with debilitating symptoms. As with other cancers, there is no known cure for mesothelioma, but there are treatment options such as chemotherapy, surgery or radiation. These options largely depend on the stage of the cancer and other factors. Early diagnosis is important in extending a patient’s life. If caught in its later stages, treatment options may be limited.

There are a lot of emotions involved in such a diagnosis, and it can be hard to watch a loved one go through such a trying time in their life. Sometimes loved ones can feel helpless or that they can’t do enough, which can lead to stress and other emotions that may interfere with their relationship with their loved one.

Coping With a Mesothelioma Diagnosis in the Family

Not only are emotions compromised when a parent or grandparent is diagnosed with mesothelioma, but daily life will also change. Mesothelioma can lead to chronic pain, shortness of breath and significant weight loss. All of these factors can contribute to difficulty in completing daily routines and may even lead to depression.

Just like patients have to learn to cope with their illness, their children and grandchildren also will need to learn to adjust. This may mean helping their loved one complete daily tasks or run errands that were not previously their responsibility.

It is important for teens and young adults to keep an ongoing relationship with their loved one who has been diagnosed with mesothelioma. Simple, daily conversations can serve as a reminder that the diagnosis does not define the relationship and that there is still hope.

Resources for Family Members

There are a number of resources available for mesothelioma patients and their families.

  • Support Groups. Support is especially important for anyone whose family member has been diagnosed with mesothelioma. Support groups can provide tips and stories from others going through a similar situation and may be able to give young adults some guidance.

  • Therapy. If a young adult needs more support, a therapist or counselor can help sort out emotions that come with a mesothelioma diagnosis in the family.

  • Information. The more patients and their families know about mesothelioma, the better. Many cancer and mesothelioma groups provide free informational packets that include information that can help young adults cope with a parent or grandparent’s diagnosis.

When a parent or grandparent is diagnosed with any type of cancer, it can affect emotions and daily life. The most important thing is for teens or young adults to seek help or guidance and know that they are not alone.

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