CURE Childhood Cancer Association

August Newsletter

CURE main logo pic

A Message from the Executive Director

As summer is forging ahead at a vigorous pace, we in the CURE office have September on our minds – Childhood Cancer and Sickle Cell Awareness month. We are encouraging our Community to come together and raise awareness for our children.

What can you do?
Below, you will find a list of different things you can do to make a difference and help increase awareness during the month of September.
Let’s get planning!!
(1) Light up gold (pediatric cancer awareness) or red (sickle cell awareness)! Local stores sell yellow and red light bulbs. Change the light on your front porch to show your support.
(2) Ask your local library, school or fire department to include that September is Childhood Cancer or Sickle Cell Awareness Month on their digital signs in front of their building for the month.
(3) Ask your school’s Athletic Director or Youth League Coordinator to paint a gold or red ribbon on the playing field! Teams can also host awareness games. Chat with the CURE staff on how we can make that happen and how we can help!
(4) Ask a local restaurant or bar to host a “Gold Party” or “Red Party” – Guests wear the color of awareness, drink and food specials centered around the awareness color.
(5) Wear a gold or red tie, ribbon or accessory throughout the month. Take a selfie and post on social media. Tag CURE and use the hashtag #GoldforCUREKids or #RedforCUREkids
(6) “Give awareness a hand” – Submit your handprint in either gold or red paint on paper to CURE (200 Westfall Road, Rochester, NY 14620) and include a brief description of why you think it’s important to raise awareness. These handprints will be on display at the Twelve Corners Starbucks in Brighton during the month of September (So send your handprint in before the end of August to be included!!) PLEASE DO NOT INCLUDE NAMES ON THESE!!
(7) Host a bake sale at your place of work, noting that it’s to raise awareness (“Life without pediatric cancer/sickle cell disease would be sweet. Enjoy a treat and help us raise awareness!”) and donate the proceeds to CURE. The CURE Staff would be more than happy to help provide baked goods (as long as we have a little notice 🙂 ).
(8) Host a jeans day at your workplace where employees pay to wear jeans. Encourage them to wear the color of the awareness ribbon you are working towards. Donate the proceeds to CURE.
(9) Tie gold or red ribbons around your house, office, mail boxes, place of work, etc. to raise awareness.
(10) Sell paper awareness ribbons to patrons at your place of work. They write their names on them and a message of hope. Proceeds can be donated to CURE. We can work with you and provide the ribbons to be written on.
(11) Stop by the CURE office (200 Westfall Road). We will have gold and red ribbons you can wear during the month.
(12) We will be selling our lawn signs again, one for childhood cancer awareness month and one for sickle cell awareness month. These will be on a first-come, first-served basis. Once we run out, we are out. Pick up will be at the CURE office the week of August 28th. Reserve your sign online here: https://curecca.ejoinme.org/cureawareness
(13) Attend the Childhood Cancer Awareness Game at Frontier Field with the Rochester Red Wings on Friday, September 1st! Wear gold!

Now that we’ve given some ideas, the creative and fun part starts! If you get your business involved in awareness and send us photos, we will promote on social media and in a special EXTRA edition of our newsletter in mid-October. We will tag your business on social media so everyone can see how you are making a difference in the community and partnering with our families!

THE FUN CONTINUES!!!
In partnership with local news, we will be hosting a Decorating Contest for the month of September. Decorate your house to raise awareness and YOU could be featured locally as an advocate of our families! We are hoping to partner with The Home Depot to kick off the month with a fun project at the end of August – stay tuned for more information!!

Phew…that’s A LOT of options! We CAN’T WAIT to see how you are going to let our families know they are not alone!!! Are you as excited as us?! Tell us how you plan to “Paint the town Gold” or “Paint the town Red” ahead of time!

Spotlight On Spencer

CURE’s spotlight kid for August is Spencer. Spencer is a 12 year old who has a fascination with the North Pole and loves penguins. He loves reading and is super close with his older brother Bryce. In August of 2016, Spencer was diagnosed with Glio Blastoma. His diagnosis came after a brief history of repetitive movements, nauseous tendencies, confusion and a prolonged headaches. After his diagnosis, he began with surgery to decrease the size of the brain tumor. Once chemotherapy started, Spencer came to the outpatient clinic for treatments with his mother and Bryce. In July, Spencer had a stroke. Since his stroke, he has been working very hard in speech, physical and other therapies to begin on the long road back to recovery. We are pleased to say, that today he is beginning to get a bit of sensation back to his right side and even said “mom”, which is very exciting for the family. Spencer is an amazing young man and we are so thrilled to see his improvement every step of the way!



Bookkeeper Position open at CURE

We are sad to say goodbye to Erin, our Bookkeeper for the past year.
We have posted the position on Indeed.com here.
Check it out if you’d like to work part-time with us here in the CURE office!


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.

Save the date! The Red Wings will be hosting a Childhood Cancer Awareness game at Frontier Field on Friday September 1st! Make sure you wear gold and stay afterwards for the firework show! 

Save the date! Morton Family Fun Day will be held on September 23rd this year! Stay tuned for more details!

SAVE the DATE

Roc City Sicklers 3rd Annual Family Picnic

September 9, 2017

11-2:00pm

Genesee Valley Field House

RAIN or SHINE

PLEASE RSVP to Gladys_magee@urmc.rochester.edu

Seeking volunteers and event coordinators

Phone:  585-275-0798

Fax:  585-273-1039

Attention CURE families! Stop in the office anytime before you head back to school and pick up draw string backpacks and lunch boxes filled with back to school essentials!


Upcoming Fundraisers


Paint & Sip for CURE!
Wednesday, September 20th
6 PM – 9 PM
MicGinny’s (2246 East River Road)
The painting for the mural is below:

In celebration of Childhood Cancer Awareness Month and Sickle Cell Disease Awareness Month, we are hosting an event to create a mural for the CURE office! $15 from every purchase will be donated to CURE!

You will not be able to take the painting home.

Each painter will be painting a small canvas, which will then be donated to CURE for our mural at the office.

Tickets are limited and can be purchased here: https://curecca.ejoinme.org/PaintAndSip2017


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!

Patrick Carr Memorial Golf Tournament

Thank you so much to everyone who came out and played in CURE’s 2nd Annual Patrick Carr Memorial Golf Tournament presented by Brighton Securities!! With your support we raised over $16,000!!!!

Thank you to everyone who stopped in and generously donated gift cards for our families! We received $720 in giftcards!! We truly appreciate everyone’s generosity!!

CURE is so appreciative of the support from Innovative Solutions. The employees of this great company donate money to wear jeans (“Casual for a Cause”) and pick different charities around town to donate to. Thank you for choosing CURE this time and for your AMAZING $1,927 donation!

Special thanks to our friend Chelsie, a LuLaRoe Consultant, who recently made an AWESOME donation to CURE! She ran a special where she would donate a pair of leggings for every pair purchased. Due to the generosity of those around (and of Chelsie) 56 pairs of leggings were donated to CURE to distribute to Moms and Caretakers on 7North!

Thank you to Kaleigh and her family and friends for collecting donations for our kids! They stopped in with over 25 boxes of crayons for our kids as part of their program “Kaleigh’s White Bags of Hope”. Thanks so much for thinking of our kiddos!

We Want To Hear From 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

Parents are the focus of attention when a child dies, and the grief of siblings is sometimes overlooked. THe death of a sibling is a tremendous loss for a child. They lose a family member, a confidant, and a life-long friend.

When your child developed cancer, you were likely completely focused on the needs of your sick child. You now may be overwhelmed with your own grief when that child dies. Your surviving children may misinterpret your grief as a message that they are not as valued as much as the sibling who died.

You can help your children during this time of grief in several ways:

  • Make grief a shared family experience. Include children in discussions about memorial plans.
  • Spend as much time as possible with your children, talking about their sibling or playing together.
  • Make sure children understand that they are not responsible for a siblings death, and help them let go of regrets and guilt.
  • Never compare siblings to your child who died. Make sure your child knows that you don’t expect them to “fill in” for him or her.
  • Set reasonable limits on their behavior. But try not to be overprotective or overly permissive. It is normal to feel protective of surviving children.
  • Ask a close family member or friend to spend extra time with siblings if your own grief prevents you form giving them the attention they need.

This full article can be found here.

Our most sincere condolences…

Kathryn Parsons – May 21st

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 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

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.

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!

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.