CURE Childhood Cancer Association

July Newsletter

CURE main logo pic

A Message from the Executive Director

Hi CURE Families, Supporters and Friends.

While the summer months are busy and exciting for all of you because you are traveling, enjoying the weather and staying active, the summer months are exciting for us here at CURE, too!  Our financial year runs from July through June. We just finished our financial year and we couldn’t be more appreciative of your support. We have so many incredible things happening in the next couple of months. Sadly, we said goodbye to some of our dedicated Board members whose terms have expired. We are, however, welcoming five new Board members to join us in our mission. We are also looking forward to our upcoming fundraising events – the 2nd Annual Patrick Carr Memorial Golf Tournament (We sold out of foursomes, which is so impressive for our organization!), the Annual Our Charity Events Motorcycle Poker Run and our 9th Annual Recipe for a CURE Sunday Brunch. We are actively seeking raffle items for the Patrick Carr Memorial Golf Tournament and the Our Charity Events Motorcycle Poker Run. We are also actively seeking sponsors for the Recipe for a CURE Sunday Brunch in addition to auction items! Please contact the CURE office if you are interested in helping us!

One of the things I look forward to most in the summer are the lemonade stands kids in the community set up for CURE. It’s so amazing to hear of the generosity and genuine kindness of youth in Rochester. If you are planning a fundraiser for CURE, please let us know! We would love to come out and say hello and thank you in person for your support (not to mention, we LOVE lemonade and sweets!!). The CURE office staff loves interacting with our families, too. Don’t be shy – come in and say hello – especially with the kiddos being on summer break!

I’m hoping to see you the week of July 25th for our Christmas in July event. This is the first time we are offering this event, but we are looking forward to it. With our gift card supply running dangerously low, we would appreciate donations of grocery store gift cards and gas gift cards to replenish our supply. We will make sure you feel festive when you come into the office!

Wishing you all a happy, healthy July. Enjoy time with your families.
Thank you for another inspiring fiscal year.

With most sincere gratitude.

Spotlight On Hailey

In 2009, Hailey was diagnosed with cancer. As you can imagine, years of treatment, procedures and ever-changing status could overwhelm a family. Not Hailey’s family. Although keeping up with treatments and procedures is overwhelming, the Conibers always think of those around them. The “Keeping Tabs on Cancer with Hailey” has been going strong for several years now, thanks to Hailey, her family and her army of followers “Hearts for Hailey”.

Hailey is one of our awesome CURE kids who is always thinking of ways to give back! Hailey has been collecting the tabs off of aluminum cans and bringing them to a scrap yard and donating the money to CURE for several years now. Her last haul was 12 oil drums weighing in at over 1,650 pounds!! At roughly 1,300 tabs per pound, that’s well over 2.1 million can tabs!! We truly appreciate Hailey and the difference she makes to other CURE families!

Bell Ringing!!

Congratulations Lyanna!!!

Check out out Facebook Live piece on Lyanna from when she came to the office to leave her mark with us!

Click here

Free CURE Programming and Events

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. Please do not include last names on your pieces. They can be sent to the CURE office or given to Kiersten or Adella at the hospital.

Upcoming Fundraisers

We are officially sold out of foursomes, but still have plenty of room for sponsors and raffle baskets! Please feel free to contact the office if you are interested in participating.

To donate online, please click here

We are currently collecting raffle items for this event. If you are interested in contributing, please contact the CURE office or e-mail Holly Dutcher (holly.dutcher@curekidscancer.com).

SAVE THE DATE:

July 8th and 9th: Corn Hill Arts Festival

July 24th: 2nd Annual Patrick Carr Memorial Golf Tournament

August 5th and 6th: Park Avenue Festival

August 27th: Poker Run

September 23rd: Morton Fun Day

October 15th: 9th Annual Recipe for a CURE Sunday Brunch

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

www.causewash.com/curekidscancer


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!


Thank you for your support!

Thank you to our friends at the Ronald McDonald House Charities of Rochester, NY who granted us $3,600 to provide meal vouchers to our families while they are staying at the hospital! Your continued support is incredible and we are sincerely appreciative!

Thank you to everyone who came out to the 6th Annual Cutting 4 a CURE event! Thank you to Simply Glamorous Salon and Spa and Pigtails and Crewcuts for offering haircuts and donating 100% of the proceeds to CURE. Cutting 4 a CURE raised over $3,000 and has raised nearly $30,000 over the past several years. This year, proceeds from the event were donated in memory of dedicated supporter Liz Pedone. #lizslegacy

Thank you to the students of Crane Elementary School from Rush Henrietta Central School District who raised nearly $4,000 for CURE! Every year the students do a Run for a CURE fundraiser and donate the proceeds to CURE. We are so thankful for their support year after year!!

Thank you to the students of St. Rita Elementary School who raised $1,700 in a jar wars fundraiser between classrooms! We appreciate all the kids wanting to give back to our families and love the creativity of the event!

Thank you so much to our Board Members whose terms have ended with the Board and who are rolling off:

Former Chair Wendy Carney

Carol Ramsdell

Jean Close

Adriana Boveda

Your contributions have been many and we loved having you as part of our organization!!
We hope to see you volunteering at future events. So this is “See You Later” and not “Goodbye”!

We would like to send a warm welcome to our newest Board Members:

Melissa Apple

Jeffrey Bradley

Debbie Coffey

Sean Fico

Megan Mack

Thank you for volunteering to help make a difference in the lives of local families!

Thank you to the Girl Scouts of Troop 250 who put together 20 blankets to go into our comfort bags! The girls also collected other items to go into our comfort bags. We give a comfort bag to each child when they are newly diagnosed and includes items such as a blanket, pillow and activities to do while in the hospital. Check out the video they put together about the project here!

We Want To Hear From You!

With a lot of summer events coming up we are in need of volunteers!

Sign up here for the Corn Hill Arts Fest!

Sign up here for Park Avenue Festival!

Sign up here to help keep our Julie Roberts Memorial Garden beautiful!

We couldn’t do what we do without our volunteers!! Thank you!

We need help hanging vinyl letters in the staircase going up to our office! We do not have the resources to hang the letters high above the stair case. If you have experience doing this and can volunteer your time to help us please email sam.corrigan@curekidscancer.com.

We are currently looking for interns for the upcoming fall semester.

If you are interested please reach out to Holly Dutcher at holly.dutcher@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 staff@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
  • 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

Ways To Take Care of Yourself

Allow yourself to grieve: Often we push the grief away, or tamp it down by distracting ourselves with activities or tasks. Trying to avoid grief only leads to prolonging it – the grief has to be allowed to surface. Unresolved grief, often referred to as complicated grief, can lead to depression, anxiety, substance abuse and health problems.

Express your feelings in a tangible way: This can be done in many ways, depending on your creativity or usual means of expression. You can write about your loss in a journal, or send a private note to the person you’ve lost. You can make a scrapbook, photo album or create an online memorial celebrating that person’s life. You can also get involved in an organization or philanthropy that was meaningful to them, or make a donation in their name.

Be physically healthy: Your mind and body are connected, and physical health helps with the emotional healing process. It’s natural to feel lethargic or low energy, but if you’re able to take a walk or a run, it will promote the process. Combat your fatigue with an appropriate amount of sleep, and choose foods that provide you not just with comfort but energy.

Don’t judge yourself, or let others judge you: You are allowed to grieve for as long and as deeply as you need to. No one – including yourself – can tell you when to “move on” or “get over it.” It’s okay to be angry, to cry, not cry or even laugh – you need to allow for moments of joy in your grief, and feel no guilt for having a moment without pain. We recommend that you read the Mourner’s Bill of Rights, to reassure yourself of your “right” to grieve.

www.healgrief.org

* This article was featured in the 2017 Spring Edition of the national newsletter of the Bereaved Parents of the USA


Our most sincere condolences…

Mackenzie Bennett – May 27th

Cheyanne Brant – June 22nd


Support:

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.

Aplastic Anemia and Bone Marrow Failure Family Weekend

It’s FREE!!

When: October 20 – 22, 2017

Where: The Hole in the Wall Gang Camp (Ashford, CT) – travel assistance may be available

What: Camp activities include fishing, archery, tennis, basketball, mini-golf, cooking zone, arts and crafts, woodworking, campfire fun, stage night and more!

Who: Children between age 5 and 15 who are living with aplastic anemia or another bone marrow failure disease. Immediate family members and siblings of any age are also welcome. Up to 25 families can be hosted for the weekend.

HOW TO REGISTER: Start by completing our PRE-REGISTRATION SURVEY. Once this is complete, someone from The Hole in the Wall Gang Camp will follow up with you and provide more details about full registration.

If you have additional questions or need further assistance,

please contact Hole in the Wall by emailing admissions@holeinthewallgang.org or calling (860) 429-3444.

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 every other Wednesday at 12pm.

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!

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 August 2, 2017

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

Next meeting is August 15, 2017

6-730pm

Free parking provided by CURE Childhood Cancer Association

Food provided by Wegmans


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.