CURE Childhood Cancer Association

June Newsletter

CURE main logo pic

A Message from the Executive Director

What is a “survivor”?

Here at CURE, we feel that the minute a child is diagnosed with cancer, a blood disease or a brain tumor, he or she is a survivor. When reflecting on the actions that follow a diagnosis, it is easy to see that what these children endure makes them survivors. The National Cancer Institute defines a survivor as: “One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.” (NCI Website). The first Sunday of every June, we host our annual “Survivor’s Day Picnic” to celebrate the lives of our brave fighters. Full of activities, food and LOTS of freebies – the event is an annual event we all look forward to. We absolutely could not host nearly 400 CURE kids and their families without help from the community: over 20 different groups offering services as well as nearly 100 volunteers. Thank you to all of you who make the day such a special one for our families. Personally, I look forward to the picnic every year. It’s a great opportunity for the office staff at CURE to see first-hand who we are dedicating our time to assist. We love seeing the families, catching up with everyone and enjoying a day to celebrate life. It’s also a great time for our Parent Advocates – so they can catch up with families outside of the hospital walls and in a fun environment. We hope you look forward to the event as much as we do. We also hear about how our CURE kids look forward to the shirts every year. Each year, the Program Coordinator at CURE brainstorms to come up with the perfect shirt for the picnic, choosing everything from the color of the shirt to the design. This year, our shirt represents courage. The color of the shirt is used in awards and honors that are associated with having courage. Our children have courage. They are some of the most courageous people we know, so we thought we would honor their courage this year with our shirt.

You may have received a letter in the mail for our annual Friends and Family campaign. We rely on this campaign to provide important funding for our programs and services, which have expanded over the past year (and we look forward to further expanding in the next year or so). Some additions include providing gas gift cards upon diagnosis, providing meals for families in the hospital during the holidays, cleaning services to families who have had a child receive a bone marrow transplant and more. We also have ipads that we are setting up to loan out to families in the inpatient area, which will include access to a Netflix subscription in addition to some additional applications. We look forward to expanding our support groups and our social offerings to CURE parents in the near future. We currently have five parents enrolled in our Parent Fit Program in partnership with 13thirty Cancer Connect. There is so much more we’d like to do! If you did not receive a letter and would still like to contribute towards our mission, please visit this website. New this year, we created a special “Friends and Family” website to make it easier than ever to give.

June is an important month, celebrating survivorship and Sickle Cell Awareness Day (which is June 19th). We hope you will join us in our celebrations and our mission to increase awareness.

Wishing you a happy ending of the school year and beginning of summer. Congratulations to all who are graduating/have graduated in 2017!


Spotlight On Kaytee

Kaytee has been volunteering her time at CURE now that she is home for the summer and we are so happy to have her! She comes to the office always eager to help in anyway she can. She has been instrumental in helping us get ready for the Survivor’s Day Picnic and keeping the office organized. Kaytee became involved with CURE seven years ago when she was diagnosed with AML Leukemia. Now she wants to spend her time giving back and helping other families who are going through a similar experience.

Kaytee is a Junior at Davenport University where she is studying Nursing. She hopes after graduation to become be a Pediatric Oncology Nurse where she can continue to give back to others. Her dream is to one day work at the hospital in Disney World! We know she is going to make a great nurse one day!

Bell Ringing!!

Congratulations Yanlexi!!! 


Yanlexi rang the bell next to his mom! Congratulations Yanlexi!


Congratulations Lily!!! 

Check out our Facebook Live piece on Lily from when she came to the office to leave her mark with us!
Click here
 


Congratulations Chris!!! 

Chris rang the bell next to his dad! Congratulations Chris!


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

The 6th Annual Cutting 4 A CURE will occur on Sunday, June 11th at two locations!

Simply Glamorous Salon and Spa (1780 East Ridge Road, Irondequoit) 10 AM – 3 PM

$25 wash and cut
$35 wash, cut and style

100% will be donated to CURE!
Schedule your appointment today: 435-4861

Raffles will be offered throughout the day.
RThunder Knighthawk will be flying by!

10% of retail purchases will be donated.

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Pigtails and Crewcuts (100 Marketplace Drive, Henrietta) 10 AM – 3 PM

$10 haircuts for all kids
Walk ins only. First come, first served.

Facepainting 10 AM – 1 PM
TR the T-Rex from the Henrietta Public Library 11 AM – 2 PM
RThunder Knighthawk will be flying by!

Bake sale from goodies provided by Bake Your Day.

100% of proceeds to be donated to CURE!

SAVE THE DATE:

June 4th: Survivors Day Picnic

June 11th: Cutting 4 A CURE

June 11th: LONGSHOTS 1ST ANNUAL & 2017 CURE CHILDHOOD CANCER GOLF TOURNAMENT IN MEMORY OF MADDOX LAWRENCE

June 19th: Fore for Four Golf Tournament

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

to donate online, please visit: https://curecca.ejoinme.org/FF2017

This tournament is going to sell out. Be sure to purchase your foursome early or you may miss a great day of golf!

MONDAY JUNE 19, 2017 ⏐ 10AM SHOTGUN START

Victor Hills Golf Course

• 8:30AM BREAKFAST/REGISTRATION
• 10:00AM SHOTGUN START
• 3PM-5PM OPEN BAR/NETWORKING/AWARDS/AUCTION
• 6PM OFF-SITE AFTER PARTY (TBA)

EACH REGISTERED GOLFER WILL RECEIVE 18 HOLES OF GOLF, LIGHT BREAKFAST, BEVERAGE STATIONS, BBQ LUNCH ON THE COURSE, OPEN BAR, NETWORKING MIXER, GRAZING STATIONS, AUCTION AND ENTRY TO AFTER-PARTY EVENT

Farley’s Friends FOREforFOUR Charity Golf Tournament charitable partners are Causewave Community Partners, The Community Place of Greater Rochester, Inc., and CURE Childhood Cancer Association!

Purchase your foursome here.

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!

WOW!!

Thanks to the over 350 participants, several volunteers and amazing sponsors, we had a FANTASTIC 8th Annual 5k and Fun Walk Presented by The Cornerstone Group of Wells Fargo Advisors! We raised a total of over $27,000 for CURE!!! Thank you. Thank you. Thank you!!!

Check out our photos here

CURE is very thankful for Holy Cross Church who raised $702.00 for CURE from their Lenten Soup Supper. This is especially meaningful to CURE because it was organized by a CURE family who wanted to give back! We are so thankful for their thoughtfulness and support.

CURE’s Julie Roberts Children’s Memorial Garden looks beautiful! We are so thankful for United Day of Rochester’s Day of Caring and the wonderful group of volunteers from Thomson Reuters and Paychex who made our garden ready for spring!

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 are currently looking for interns for the summer and 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 sam.corrigan@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

To Vacation or Not To Vacation

By Shirley Cognard Ottman

Summer is often the time of family reunions, vacations, family outings at nearby lakes or other places of recreation. Such occasions may be difficult for bereaved families especially those recently bereaved. Sometimes one asks why take a vacation when I really cannot enjoy it? Or if we go on vacation for the sake of our survivor children, how can I be certain that that is the best decision for us to make? Or if we attend our family reunion, will the rest of my family make me uncomfortable if I cry or if they deliberately refuse to use my child’s name? Unfortunately there is no one answer to any of these questions. It is a gamble whatever decision one makes. But my personal experience, one;s worst fears are seldom realized.

If you really do not want to leave home, then don’t. Use your vacation time to work in your yard, to go to a movie every day if you want to do so, to redecorate a room or two, to curl up with several good books, to begin some project your son or daughter once mentioned if you would like to do it for him or her, to write down feelings and perceptions about your grief to assist your own healing. Some persons benefit from returning to a favorite vacation spot, while others find release for their pain in new and different surroundings they have never before visited.

Still others may look forward to family reunions to garner support and love from other family members whom they do not see often. Some, however want to avoid extended family members until they themselves have regained their equilibrium. To some, familiar haunts at beaches, lake-side cottages, or mountain cabins are tied to beautiful memories of their children which they seek repeatedly while others avoid such places because the memories are too overwhelming until they intensity of their grief has subsided.

The point is that each of us is different. What helps one bereaved family member may not be helpful to another. To find the best path for your family, discuss alternatives with your spouse and surviving children. If each family member expresses his or her desires and apprehensions about the customary summer family activities, they share the decision-making process and discover truly creative ways to help each other.

Those who live alone with their grief may find friends to be valuable listeners. Such friends may, even unwittingly sometimes, help one to find the better path. In any event, be kind to yourself. Choose well for yourself. Remember, too, that it is all right to change your mind at any time. Next summer will be less difficult, you can count on that. I have been there, I know.

www.whatsyourgrief.com

* This article was featured in the 2014 Summer Edition of the national newsletter of the Bereaved Parents of the USA

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.

Be a Healthy Hero

(Healthy, Enriching Summer for Rochester’s Kids)

5 Week Summer Camp at MCC

Monday, July 3rd – Friday, August 4

8 AM – 3:30 PM

Offered to students entering 1st – 6th grades at the following schools:

School #2 – Clara Barton, School #10 – Dr. Walter Cooper Academy, School #12 – James P.B. Duffy, School #19 – Dr. Charles T. Lunsford, School #33 – John James Audubon, School #43 – Theodore Roosevelt, School #46 – Charles Carroll, School #58 – World of Inquiry, EMHCS – Eugenio Maria De Hostos
For more information, click here: 2017 Healthy Hero Summer Camp Application FINAL_yellow

Forms: 2017 Image Release Form and 2017 MCC Healthy Hero Camp Medical_blue

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 June 7, 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 June 20,2017

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.