CURE Childhood Cancer Association

April Newsletter

CURE main logo pic

Volunteer Appreciation Month

April is Volunteer Appreciation Month!

We want to give a big heartfelt thank you to our volunteers for all that you do! We could not achieve what we do at CURE without the time and support of our volunteers. You make the world a better place to live in and we are extremely grateful for each and every one of you! This month, we celebrate all of you! Thank you.

Spotlight On Jovi

“My name is Jovi and I am turning 6 at the end of April. I have Beta Thalassemia Major and I will be having my 80th blood transfusion this month. Even though I have a chronic illness, it doesn’t define who I am. I am a sweet and energetic boy whose smiles lights up the room.  I have a silly sense of humor and I love to make others laugh. I love to dance and have some pretty unique and one-of-a-kind dance moves. I have a huge obsession for Ghostbusters, Scooby-Doo, anything Lego and all villians (because they have more fun). My favorite thing to eat is chocolate ice cream with rainbow sprinkles but it definitely has to be on a cone. My favorite hobbies are camping, soccer, mini-golf,  making sandcastles, traveling, drawing and building the biggest cities with all my toys. I love to celebrate all the holidays with Halloween and Christmas being my 2 favorite. I love dressing up to anything themed and in costume and I have a “go big or go home” attitude about it.  As you can see, Thalassemia is just a tiny part of me.”

The Winter Interns

#WINtern Update

The Million Penny Drive is running along smoothly and so far we have raised  $4,400 for CURE! We are so thankful for all of our participating schools and businesses! We are still working to recruit additional schools and businesses for the month of April so that we can reach our goal of $7,000; if you are interested you can contact the CURE office by phone at (585) 473-0180 or through our emails at: ecost3@u.brockport.edu or gzamp1@u.brockport.edu.

Pictured above: All the pennies collected by Churchville Chili High School! 

We were fortunate enough to help out at CURE’s 4th Annual Trivia Night; it was a joy to meet supporters of this organization. It was a lot of hard work between planning and running the event, but it was well worth it to see the looks of excitement on guests’ faces. We are currently helping to plan the 9th Annual 5K and Fun Walk presented by The Cornerstone Group of Wells Fargo Advisors. There is a lot of hard-work and dedication that goes into planning such a large event and we are excited to see the end results.

We have about a month left with our internship and, although we are sad to be leaving our full-time internships, the organization will gain two life-long volunteers. We have loved seeing the impact this organization has on the community and families whose lives it has touched.

We are grateful for the opportunity and continue to grow as public health professionals.

Free CURE Programming and Events

Join us Sunday 4/15 for a Parents Night Out! This is a free event offered to all of our CURE parents! Email andrea.shaffer@curekidscancer.com to RSVP!!

Art Work Needed

We have a “Wall of Fame” at the Twelve Corners Starbucks that features artwork of our CURE kids. We would love to feature your work and the wall could use a little love.  Some SPRING themed pictures would really brighten up the wall!! Please do not include last names on your pieces. They can be sent to the CURE office (CURE Childhood Cancer Association, ATTN: Andrea Shaffer, 200 Westfall Road, Rochester, NY 14620) or given to Kiersten or Adella at the hospital.

Welcome New Board Members!

Dana Barnes – Enterprise Fleet Management

Brittany Charles – Pricewaterhouse Coopers, LLP

Sarah Kerns – University of Rochester Medical Center

Rayon Boxx  – Canandaigua National Bank

Not pictured: 

Joseph DiFabio – Minuteman Press

Thank you for your support!

March 9th was our 4th Annual Trivia Night, and WOW did we have a great turnout and lots of laughs! We raised nearly $10,000 for our CURE families!

We would like to say a BIG thank you to Perinton VFW for letting us host at their venue, Carrabba’s Italian Grill- Rochester for providing everyone with a delicious meal and to Carol Ramsdell for being such a wonderful event coordinator! Thank you to everyone who came, your support towards CURE makes such a large difference to so many families!

Thank you so much to Fairport High School who held their Brotherhood Sisterhood  fundraiser in honor of our good friend Mark Crane and donated the proceeds to CURE! They raised $1,500!!

A BIG thank you to everyone who came out to the Celtic Family Faire presented by TOPS Markets at the Rochester Riverside Hotel! They raised just shy of $800 for CURE families! And thank you to Shelly’s Sweet Shoppe for donating cookies to the event!!

Thank you so much to the Brockport Lions Club for inviting us to their semi-monthly meeting. They donated $250 to CURE’s 5k and Fun Walk on April 28th!

Thank you so much to everyone who came out to the 31st Annual Senior Select All-Star game! We raised almost $5,000 from all of your support!!

Check out the video here of our special guest, Noah, dropping the first puck! 

Upcoming Fundraisers

It’s a jungle out there…
Help us support families as they navigate their journeys by participating in our 9th Annual 5k and Fun Walk
presented by The Cornerstone Group of Wells Fargo Advisors.

When: April 28, 2018

Where: Longhouse Shelter, Seneca Park

5k Run and Fun Walk kicks off at 9:30 AM

Price for registration $20.  This includes a CURE bracelet and CURE sunglasses.
PRICING INCREASES TO $25 THE DAY OF THE EVENT.

Raise additional funds through donations and/or fundraising teams.  Your direct donation and those made to your fundraising page contribute to your level of reward.

Raise: 
$30- receive a cotton t-shirt and CURE sunglasses 
$60- receive a tech t-shirt and CURE sunglasses 
$100- receive a hooded sweatshirt and CURE sunglasses

Assemble your team and gather your crew! Sign up today here! 

Please help us reach out goal of $30,000!!

Interested in volunteering? Sign up here!!


3rd Annual Patrick Carr Memorial Golf Tournament
presented by Brighton Securities

Monday, July 23, 2018
8:00 am – 6:00 pm
Chili Country Club
Join us for a great day of golf and showing support for local families coping with childhood cancer or chronic blood disorders. 

Purchase your foursome or sponsorship here!

Our friends at Mint Salon have kindly offered to host this incredible series of events this year to support our families. For a $10 donation you can get your hair braided! Here’s a list of upcoming dates:

April 12th, 2018 at the Record Archive 33 1/3 Rockwood Street Rochester, NY 14610
May 10th, 2018 at the Scotland Yard Pub 187 Saint Paul Street Rochester, NY 14604
May 24th, 2018 at The Blossom Road Pub 198 Winton Road North Rochester, NY 14610

Our friends at Awareness Coffee are helping to spread awareness about Pediatric Cancer with their coffee made from a specialty bean out of Peru, and roasted to perfection with subtle floral and chocolate notes.

A portion of proceeds will be donated to CURE, Golisano Children’s Hospital and Camp Good Days – your choice at checkout!

Buy the coffee here!

It’s that time of year, wash away the salt and traces of winter all while supporting CURE!

Click here to purchase!


We are excited to announce that we have partnered with Rite Aid and are now an official KidCents charity! KidCents is a program created by The Rite Aid Foundation that allows Rite Aid customers to round up their purchases to the nearest dollar and donate their change to help support kid-focused charities.

Here’s how you can enroll in the KidCents program and round-up to our charity:

Step 1: Enroll in wellness+ with Plenti (Skip to Step 2 if you are already a wellness+ with Plenti member)

  • Visit KidCents.com and click ‘Sign In’ on the left
  • Click the box on the right to ‘Enroll in wellness+ with Plenti
  • Complete registration process for wellness+ with Plenti
  • Click through to finish signing up in Plenti
  • When finished with both processes, you will be directed to RiteAid.com

Step 2: Enroll in the KidCents Round-Up Program

  • Visit KidCents.com
  • You should see your account logged in on the left. If not, sign in with the account information.
  • Click ‘Start rounding up today!’ dial on the left

Step 3: Designate Your Charity

  • Click ‘Select a Charity’ on the left
  • Type [INSERT CHARITY NAME HERE] and click ‘Select This Charity’

By rounding up, you are helping us to reach our goals by simply shopping at Rite Aid. Feel free to invite your friends and family to participate in the program. Imagine the change that your change can make!


Community Fundraisers and Events

Garden of Hope Chicken Barbecue Dinner.
Saturday, April 14 at 10:00 am
325 N Union Street

$10 per meal. Please place order ahead of time to Inez Burns at 585-301-7564 or inezburns84@yahoo.com. All proceeds will go to benefit the Community Garden of Hope.

St. Baldrick’s Event
ROC the Bald/Shave for the Brave
April 15, 2018
Finn’s Tap Room
Get involved here!

We Want To Hear From You!

Join Our Team This Summer!

We are currently looking for interns for Summer ’18 and Fall ’18!!

If you are interested, please email andrea.shaffer@curekidscancer.com or sam.corrigan@curekidscancer.com

We are looking for volunteers with trucks or vans to help us pack for CURE’s 5k and Fun Walk! We are looking for volunteers to come to the office on Friday, April 27th to help us pack up items for the 5k and Fun Walk and bring them to Seneca Park on Saturday, April 28th morning. If you are able to volunteer please contact Sam at sam.corrigan@curekidscancer.com 

We are so excited! This year marks the 10th Anniversary of the Recipe for a CURE Sunday Brunch!
We are currently in need of committee members.
The Brunch will be held at the Rochester Riverside Hotel on Sunday, October 14th. The theme is: Jungle!!

Committee members are needed in the following areas:

*Silent Auction

*Sponsorships

*Table Captains

*Decorations

* Kids’ Room and Activities

Our first committee meeting will be held on April 12 at 5:30 pm at the CURE office.

If you are interested in joining the committee please email

sam.corrigan@curekidscancer.com 

Has CURE helped you? We would love to hear stories about how CURE has helped you and your family. These stories will be shared with grantors, donors, on our website and social media. We want the community to know their contributions are making a difference! Submissions can be sent to staff@curekidscancer.com.

What programming would you like to see at CURE? We are working on developing more Parents’ Night Out events (where would you like us to set one up??) as well as joint programming with other local organizations. What would you like to see us work on? Please send suggestions to Andrea.Shaffer@curekidscancer.com


Wish List Items Needed:

We are so grateful to the community for all of the wonderful donations we receive throughout the year. We could not service all the families we do without this generous support.  If you or a community group you belong to is looking for something to do for a charity, please consider donating items from CURE’s wish list so that we can continue to provide for our families.

Items Needed:

  • A cure for childhood cancer, blood diseases and brain tumors!
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Small pocket/purse-sized calendars
  • Toiletry items
  • Paper towels and toilet paper
  • Items for teens or young adults
  • Toys for kids under 3 years old

We ask that all items be new and recently purchased.  Thank you!


Bereaved Families Corner

Look for me in Rainbows

“Time for me to go now, I won’t say goodbye;
Look for me in rainbows, way up in the sky.
In the morning sunrise when all the world is new,
Just look for me and love me, as you know I loved you.

Time for me to leave you, I won’t say goodbye;
Look for me in rainbows, high up in the sky.
In the evening sunset, when all the world is through,
Just look for me and love me, and I’ll be close to you.

It won’t be forever, the day will come and then
My loving arms will hold you, when we meet again.

Time for us to part now, we won’t say goodbye;
Look for me in rainbows, shining in the sky.
Every waking moment, and all your whole life through
Just look for me and love me, as you know I loved you.

Just wish me to be near you,
And I’ll be there with you”

-Vicki Brown

Our most sincere condolences…

Adriana Truesell – February 11th

Support:

Bereavement Group:

illustration of the forget-me-not flowers over white background

The first Wednesday of each month

Hosted by Kiersten Kunick and Adella Ivison

200 Westfall Road, Rochester 14620

Next meeting is April 4, 2018

From 7-830pm

No reservations required


ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

6-730pm

Free Parking

Food provided by Wegmans


Are you looking for someone to help tutor your child? Boost provides supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development. This group of teachers will not supplement the tutoring being provided by the school, but will act as a “boost” to a child by helping him/her better understand material being presented at the child’s grade level. Our tutors use their teaching expertise to fill the gap left when traditional schooling is not possible. The group is currently in need of volunteer tutors. For more information please go to www.boost4kids.com or contact Linda Bolan at 585-317-7269.

Educational Consultant Services from CURE

Do you have questions and concerns about your child’s schooling after diagnosis of cancer, brain tumor or blood disorder? CURE can help. Kathryn Wissler, M. Ed is available for educational consultation with Pediatric Hematology Oncology Patients seen at Golisano Children’s Hospital at Strong.  If you would like to speak with Kathy Wissler either in person or via phone, please contact Kiersten Kunick , CURE Parent Advocate, at 585-697-4470, or call the CURE office at 585-473-0180 and she will make a referral. This service is provided free for CURE families.

Outpatient/On treatment Support Group:

Kiersten Kunick will host an Outpatient/On treatment Support Group for parents at the CURE office once per month.

This meeting will be held from 12pm – 1pm on the 2nd Wednesday of every month.

Join us and connect with other outpatient caregivers!

Feel free to reach out to Kiersten kiersten.kunick@curekidscancer.com

Long-term Survivor Support Group:

Adella Ivison will host a Long-term Survivorship Support Group for caregivers at the CURE office once per month.

This meeting will be held from 6:30pm – 8pm on the 4th Wednesday of every month.

Join us and connect with others about late effects and more.

Feel free to contact Adella at adella.ivison@curekidscancer.com

Facebook Live:

Kiersten Kunick and Adella Ivison, Parent Advocates, go live on Facebook.

They can answer any questions during this time, share upcoming news, provide support and connect parents with other parents.

Have a topic you’d like to hear about? Feel free to reach out to Kiersten kiersten.kunick@curekidscancder.com or Adella adella.ivison@curekidscancer.com and share!

Brian Bisgrove Home of Courage:

The Brian Bisgrove Home of Courage , located an hour away from Rochester) is a retreat and respite home for families with children who have life-altering conditions.   Children and their families are invited into the beautiful , handsomely-appointed log cabin for a 3 or 4 day stay of rest and repose, all comepletely free of charge.  At the Home medically fragile childere can experience a different kind of healing, one of the mind and spirit.  Its a place to let go of anxiety and stress and focus on the family.

The website (with more detailed information on the Home and the application) is www.homeofcourage.com.