CURE Childhood Cancer Association

September Newsletter

homeslider1

It’s Childhood Cancer & Sickle Cell Awareness Month!

Go Gold for Pediatric Cancer!

pediatric awareness ribbon

Go Red for Sickle Cell Disease!

sickle cell awareness ribbon


Did you Know…….

Did you know annually, an average of 60 children are diagnosed with cancer AND 15 children pass away from cancer in the Rochester, NY area?

Did you know Sickle Cell Disease is the MOST COMMON genetic disorder in the United States?

Less than 4% of government research funding for cancer is designated to research over 20 different childhood cancers.

On average, 1,000 babies are born with Sickle Cell Disease in the United States annually?

Did you know that 1 out of 330 children will be diagnosed with cancer before they are 20 years old?

Did you know that a normal red blood cell can live for 120 days, but a sickle shaped cell can only live 10 to 20 days?

The first step toward change is awareness.

You can help make a difference by helping to get the message out. We want to bring attention to the brave children facing these terrible diseases. Our mission at CURE is to advocate for our families to let them know we are there for them and we will continue to be there for them every step of the way. CURE recognizes that awareness is just as important as the programs and services we provide to our families.


Marks Pizzeria:

marks pizeria

During the month of September, Marks Pizzeria is working hard to spread awareness for childhood cancer. All of the cancer fund donation jugs at each location will be collecting money for CURE childhood cancer association. Additionally, several staff members will be in  “go gold” shirts AND each location has youth shirts to give out to our special CURE kids. They are also putting informational box toppers about CURE on every order during September. Be sure to support marks and stop in to a location near you to eat delicious food and get an awareness t-shirt!

Childhood Cancer Awareness Night @ Frontier Field with the Rochester Red Wings

flag for FB

August 29th was the childhood cancer Rochester Red Wings game at Frontier Field, and many CURE families were able to attend for free thanks to generous donations of tickets from some friends of CURE! Frontier Field offered the first 500 kids to enter the stadium to eat free, oncology kids and their families were able to hold the flag on the field during the national anthem and others were able to throw the first pitch with Dr. Korones! We are extremely thankful that our families had the opportunity to attend the game for an amazing night to kick of Childhood Cancer Awareness Month!


Our sincere sympathy to the friends and family of

Erica Jenkins

8/24/2016


A Message from the Executive Director

Dear Friends, Families and Supporters.

It’s September. It’s our month. September is Childhood Cancer and Sickle Cell Awareness month. This is our time to spread awareness in our community. This month, I am challenging each and every one of you to do something to raise awareness. There are SO many ways for you to make a difference and spread awareness. A big thank you to the Rochester Red Wings and Barb Klube-Falso for coordinating the very special childhood cancer awareness game on August 29th. An additional thank you to the friends of CURE who donated tickets so our CURE families could attend and participate free of charge.

Some of our friends have chosen to make a difference with us and spread awareness this month:

  • CURE Kid, Hailey Coniber, raised a solid gold flag at the Radisson Hotel Rochester Riverside on August 31st. This flag will fly all month long. Our friends at the Radisson have even challenged their neighbors to do something to go gold for the month of September as well.
  • iHeart Media will be playing 15 second PSAs, sharing the importance of September with their listeners
  • LAMAR worked with us to have a billboard displayed along 390 near Chili stating it is Childhood Cancer Awareness Month
  • The City of Rochester is encouraging individuals and businesses to light up gold the week of September 18th. The list of participants keeps growing, but so far the following are on board to light up gold that week: RGRTA Transit Center, City Hall, The Penthouse at One East Avenue, the Kodak building, City Gate and the Rundel Memorial Building of the Central Library of Rochester and Monroe County. More businesses and buildings are being added by the day!
  • Our friends at Mark’s Pizzeria will be going gold! Each location will be going gold, employees will be in gold shirts and all donations collected during the month of September from each location’s “Cancer Fund” jug will be donated to CURE!
  • NOSH Restaurant is honoring our little fighters with a display in their restaurant

Do you want to make a difference, too? Join our challenge! #GoGoldForKids

CURE-gold-header-04

We are launching a social media campaign to raise awareness for Childhood Cancer Awareness Month. We are following the golden rule to honor our little fighters.

Here’s how the challenge works:

  • Perform an act of kindness for someone around you
  • Record yourself talking about the act of kindness, post onto social media, use #GoGoldForKids
    • “With all the negativity that has been surrounding us lately, I am challenging X, Y, Z to go gold in September in recognition of Childhood Cancer Awareness Month by following the golden rule and performing an act of kindness for someone around them. I did ______________________ as my act of kindness. You have 24 hours to accept and complete your challenge in honor of all the little fighters who battled, are battling and have battled pediatric cancer. If you would prefer to donate to make an impact that way, please visit curekidscancer.com and make a difference today.”

My act of kindness is going to be to deliver a plate of cookies to the outpatient clinic on September 1st.

What are you going to do in September to be a voice for our pediatric oncology families and sickle cell families?

Let’s make this go viral in honor of our kids – the real  heroes in our lives. Let’s raise awareness together! Follow us on social media for all kinds of good awareness ideas and happenings across the city! We can’t wait to hear what you will be doing! Please share with us! Tag us in photos. Let’s make a difference together!

Sending lots of love to our sickle cell families and pediatric oncology families during this month. We hear you. We are here for you.


Congratulations, Arianna!

arianna bell ring

13 month old, Arianna, rang the bell of hope last month surrounded by her family signifying her last chemotherapy treatment! Arianna was diagnosed in January 2016 with Hepatoblastoma.


Congratulations, Kailee!

kailee bell ring

Surrounded by her mother, father and sister, 5 year old Kailee, diagnosed with Rhabdosarcoma, rang the bell of hope to signify her last chemotherapy treatment!


Congratulations, Tristyn!

tristyn bellring

Tristyn, 4 years old, surrounded by his five siblings and his parents, rang the bell on 7 North on August 16th as he ended his last chemotherapy treatment! Tristyn was diagnosed with Burkitts Lymphoma in January 2016.


40 Friends of CURE

Joan Reeves:

joan reeves

Joan Reeves came to CURE in 1991 when her daughter Stephanie was diagnosed with a brain tumor. She attended treatment support groups and we were drawn to her strength and determination to fight for her daughter. Sadly, Stephanie passed away in 1995. Joan took her heartbreak and reached out to other parents who lost their child to cancer. Joan, together with Joan Marcello, another parent who lost a teenage daughter to cancer, became facilitators of CURE’s monthly bereavement group. The two Joans would reach out to all newly bereaved parents though a phone call, letting the parents know they were not alone, they were there to talk and invited them to the bereavement support group. This gesture meant so much to our parents. Joan continues her support by mailing anniversary cards to our bereaved families, letting them know their child is not forgotten. Joan has been an advocate for our bereaved parents, a compassionate friend and listener. The CURE staff, board and families are grateful to Joan for her nearly 20 years of service to our bereaved families.

Linda Bolan:

linda bolan

Linda Bolan is a retired teacher with over 40 years of experience. She is our Boost Coordinator. Linda founded Boost in 2008 soon after her grandson, Willem David Bolan, died from Infant Leukemia on October 4, 2007, at the age of 8 months. Willem was diagnosed at six weeks with Leukemia and died after his bone marrow transplant. Linda then decided she wanted to give back to other families whose children had cancer or other chronic diseases as a way to honor Willem’s memory.

Linda has amassed a database of over 120 tutor volunteers, consisting mainly of retired teachers.These teachers volunteer their time to provide a “boost” to a child by helping them better understand material that they have missed when not in class and “boosts” the tutoring already being provided by the school. Everything centers on the child’s needs and the tutor’s availability. Boost is a major component of CURE’s educational program

When a referral or request for tutoring comes in, Linda swings into action to find just the right fit for the subject area in need. Thanks to Linda and her army of volunteers. We are so appreciative of all she has done for all of the CURE families!

Judy Stone:

judt stone and sora sachs

Judy Stone has been a friend of CURE for many years. She joined our CURE families when her son Patrick was diagnosed with Lymphoma. Sadly, Patrick passed away in April of 1979. Since that time, Judy has been a supporter of our bereaved families. She has worked for years helping with our Remembrance Service offering help and advise to our staff as well as support in the planning and coordination of the Remembrance Service. Judy is the one who donates the beautifully decorated boxes our families use to put their “thoughts of love” notes for their loved ones. She is a tireless volunteer and a long time friend to our CURE families. CURE thanks Judy for her unwavering support of our families in need and looks forward to many more years of her involvement with CURE.

Coniber Family:

coniber family

Hailey Coniber is a vivacious 9 year old and if you meet her family, you can see where she gets it! The Coniber Family has been involved with CURE since Hailey was 2 years old and received the diagnosis of adrenalcortical carcinoma. It is a diagnosis that keeps her visiting the hospital regularly. With her regular visits, Hailey and her family saw the need to help others in some way. They came up with collecting can tabs from the top of soda pop cans. It was something that was easy to do and cost nothing but a little bit of time. Little did they know this would turn into a full fledged program. Freinds of theirs from the camp they visit, along with several bars started collecting the tabs for Hailey. They take these tabs to the salvage yard and sell them and donate the money to CURE. They have collected over 3 million tabs to date! They feel that it is their way of showing Hailey how to pay it forward without actually asking for money and it has made a difference! When this family is not collecting pop tabs, they spend their time at their camp where Hailey and her sister like to swim and play bocce and hang with their two dogs. Their support is certainly a family affair, but it also now a community affair too!

Focus of This Month…

17th Annual Our Charity Events’ Motorcycle Poker Run

poker runn

Another amazing day put together by the team from Our Charity Events! Thank you to our friends Tim & Joelle Lane and their wonderful crew of volunteers, Rush Creekside Inn, Two Worlds and Flint Creek! Thank you to all the participants! Over the past 17 years, Our Charity Events has raised nearly $100,000 for CURE!


The Recipe for a CURE Sunday Brunch is rapidly approaching!

Banner

There’s no place like home.

Sunday, October 9th; Radisson Hotel Rochester Riverside

We are accepting sponsors and tickets are now available!


ROC City Sicklers Backpack Drive

sicklers donations

We would like to thank the Black Physicians Network and The Association of Minority Residents Fellows for the donation of $250 and for all the school supplies donations for the backpack drive!


Brockport Saturday of Service

brockport saturday of service

8 SUNY Brockport students came to the CURE office on August 27th to participate in their service day. They weeded the garden and put new mulch down. Thank you for helping us keep the Julie Roberts Children’s Memorial Garden beautiful!


Wilson Day

wilson day

12 University of Rochester Freshman participated in Wilson Day (service day). They stayed for 4 hours and helped clean up the inside and outside of the office. We always appreciate the help from our community!


CURE first Parents’ Night Out was a success!

Painting with a Twist in Henrietta

painting with a twist after

Thank you, again, to our friends at The Melting Pot for their generous donation of goodies for our CURE Parents to munch on!


Did you visit the CURE booth at Park Ave Fest?

Our staff and friends had a blast with the Wizard of Oz Props!

park ave fest


CURE Bears for Hope and Love

CURE bears


Be sure to register for Annalise’s Friends 5k coming up on Saturday, September 24th!

anna

Register here!


Be sure to register for the Running to Remember 5k coming up on Saturday, September 24th!

Register here!


The Princess Project

Want to have a skype session with a princess?

Contact Kylee@amomentofmagic.org or fill out a contact form on their website at amomentofmagic.org

You can pick the time of the skype session and the princess you would like to skype with.


True Therapeutic Massage – Where Healing Begins

Interested?

Contact Jen Krieger at jenny@TrueTherapeuticMassage.com and mention that you’re a CURE parent!

visit her website at www.TrueTherapeuticMassage.com


Spot Light On…

Keeping Tabs on Hailey

hailey update

Hailey collects pop tabs off aluminum cans, brings them to a local recycling center, and then donates the money back to CURE. Well, at the Attica Rodeo this summer, Hailey had a jar for people to put their pop can tabs in and they did more than that! People started dropping in spare change and cash into the bucket and ended up raising almost $600!!! Hailey and the Coniber family VERY generously donated the money to CURE.


Awareness Month..

Help Spread Awareness during the month of September!

Childhood Cancer Awareness Lawn Sign

$10

http://curecca.ejoinme.org/CUREawareness

pick up: at the CURE office -200 Westfall Road, Rochester 14620


Help Spread Awareness during the month of September!

Sickle Cell Awareness Lawn Sign

$10

http://curecca.ejoinme.org/CUREawareness

pick up: at the CURE office -200 Westfall Road, Rochester 14620


penny driveKick off Awareness month with a back to school penny drive!

If your school would like to participate in CURE’s Annual Penny Drive Fundraiser, please email Chelsea.lepore@curekidscancer.com.

It is simple: CURE brings gallon milk jugs to your school and the students fill them with spare change, and at the end of the fundraiser, CURE will pick up the jugs and find out the total amount of money raised!

Some schools even like to make it a fun and friendly competition between classes and grades. It is a fun and easy way to support local families who are dealing with childhood cancers and blood disorders.


ROC City Sicklers Picnic

Sunday, September 18th

Genesee Valley Park – Roundhouse Shelter

contact: keshialittle7@gmail.com


Charmed by Charity Event

in recognition of Childhood Cancer Awareness and Sickle Cell Awareness month

alex and ani

September 13th; 6 – 9 PM

Locations: Victor and Culver Road Armory

15% of every purchase is generously donated to CURE


Coming Up…

Trick or Treat for CURE!

YOU can make a difference and help our families while you are out and about on Halloween!

Interested?

box

Trick -or- Treat for spare change! Help local families dealing with childhood cancers and blood disorders!

contact Chelsea.lepore@curekidscancer.com


CURE Parents’ Night Out

October 21, 2016

LASERTRON

1175 Marketplace Dr, Henrietta, NY 14623

Food at 7pm, Game starts at 8pm

LIMITED AVAILABILITY!

contact Chelsea.lepore@curekidscancer.com if interested!

lasertron


Morton Family Fun Day

pumpkin patch

Start off fall with a family fun day at Morton Baptist Church! Free for CURE families

1152 County Line Road, Hamlin, NY 14464

includes: lunch at 12pm

1-4pm: pony rides, wagon rides, pumpkin and apple picking, games, prizes and animal feeding

We would like to thank Morton Baptist Church for hosting this day for our families for over 25 years!

If your family is interested, please contact Chelsea.lepore@curekidscancer.com


Support Groups

Bereavement Group

bereavement

the first Wednesday of each month

at 200 Westfall Road, Rochester 14620

September 7th from 7 to 8:30pm

hosted by bereaved parents – Jim and Andrea Spencer


ROC City Sicklers

ROC City Sicklers Logo

the third Tuesday of each month

UR Medicine – Conference room ACF A/B

Free Parking – Food generously donated by Wegmans

September 20th from 6 to 7:30pm


Extra Assistance

Back to School

Are your kids going back to school this month? Would you like some assistance?

CURE can offer families drawstring backpacks with a folder, notebook, pens, pencils, tissues, a water, crayons and some construction paper. Kids 9 years old and under can get lunch boxes! If you are interested, please email Chelsea.lepore@curekidscancer.com with the family’s first and last name, number of backpacks needed and the children’s genders. Backpacks will need to be picked up at the CURE office at 200 Westfall Road, Rochester 14620


Thanksgiving Dinner

Would you like a Thanksgiving meal delivered to your door on Thanksgiving Day? The Kiwanis Meal Drive is starting to collect families who need some dinner assistance this November.

includes: Sliced turkey, gravy, stuffing, mashed potatoes, vegetables, a roll and desert

If you are interested, please email Chelsea.lepore@curekidscancer.com and be ready with your first and last name, number of meals needed, your home address for drop off and a valid phone number.


Childhood Cancer:A Parent’s Guide to Solid Tumor Cancers

full of stories from more than 150 families and the text was reviewed by renowned experts in pediatric oncology.

sale prices are available here: http://www.ipgbook.com/childhood-cancer-products-9781941089903.php?page_id=21

1 book, 20% off, use code CHILD  |  2 books, 30% off, use code CHILD30


Jamie’s Journey

a book for siblings

cancer from the voice of a sibling

order online!

www.siblingcancerbook.com