CURE Childhood Cancer Association

June Newsletter

CURE main logo pic

2018 Volunteer Appreciation

We had so much fun at our Volunteer Appreciation Dinner on May 23rd! Thank you so much to everyone who came out. We love having the opportunity to show our volunteers how much we appreciate them. We truly could not provide the support to our families that we do without our devoted volunteers! A special congratulations to our 2018 volunteer award winners!

Dedicated Family of the Year – The Phillips, Dobson, Pellegrini Family

This local family has befriended CURE for the past two and a half years! Donating to CURE in monetary donations, time, friendship and advocacy. This family plays a huge role in the Patrick Carr Memorial Golf Tournament and the CURE Sunday Brunch every year. We cannot repay them for their kindness, advocacy and genuine care for our families.

Young Volunteer or the Year – Courtney Marr

Courtney has spent her whole senior year coming in once a week helping around the office anywhere she can! Beyond her help in the office she has volunteered at every single CURE event this year! We are going to miss her as she goes off to college but know she is going to do big things!

Strong Partner – Mike Ellis

Mike is a social worker over at Golisano Children’s Hospital and one of CURE’s biggest supporters! He is a cheerleader for us at the hospital and always makes sure families who need the support get connected to one of our Parent Advocates immediately!


John and Judi Sturge Committed Volunteer Award – Marv and Sora Sachs

The prestigious John and Judi Sturge Committed Volunteer Award is awarded to a friend of CURE Childhood Cancer Association who displays characteristics of compassion and kindness to our CURE kids and their families all while committing him/herself to the cause and the mission of the organization. You can count on seeing Marv and Sora at every CURE event – both fundraising and free to our families – ready and eager to help! Sora also takes care of sending all of the birthday cards to our families, in 2017 that was nearly 300 children!

Outstanding Community Partner – Crane Elementary School

For the last several years our friends at Crane Elementary School have hosted a Fun Run for CURE, raising both awareness and donations for CURE families. Unfortunately they had a prior commitment and were unable to attend, but we thank them for their support!

Spotlight On Eleanor

Hi! My name is Ella and I just turned five at the end of last month. Shortly after my first birthday I was diagnosed with severe chronic neutropenia (meaning I have a compromised immune system and it is dangerous if I get sick). I thank Jesus every day for all He has done for me and my family and am blessed even with having this diagnosis as it does not define me. I am cautious, wear a mask (which does get confusing for others and I have to explain why) and love hand sanitizer; especially the sparkly ones! Even though I don’t know if I will ever be healed or know what will happen, I am still happy with this life Jesus gave me. I am very thankful for the staff at the hospital and my pediatrician but I am immensely blessed by the staff, volunteers and donors of CURE. They have all been a Godsend for myself as well as my family.

I really enjoy dancing and singing. I love arts and crafts; making projects is my forte. I especially excel at drawing and painting. I like to play dress-up, soccer and have fun playing anything outside. Going swimming at my aunts’ and throwing snowballs at my MeMe and PaPa are some favorite things to do (rides on my aunt’s boat, making snow angels and snowmen are fun too)! I love spending time with my grandparents, aunts, uncles, cousins, great-aunts and great-uncles. I love my mommy, daddy, baby brother and sister and enjoy my funny older half-brothers. I am a very empathetic, caring, fun-loving, sweet, outgoing, active, dramatic and exquisite little girl! I love all animals; my favorites being Bill (the white rhino at the zoo), Sawyer (my cat) and Shadow, Takoda and Penny (my aunts’ dogs). I love most things with peanut butter or pumpkin, breakfast foods, gelato and love baking goodies (plus using my special natural sprinkles)! I have always been small for my age but am an extremely tough girl and I’m sure I always will be.

The Summer Interns

Hi, my name is Giannette Kokkoris (left) and I am currently a sophomore at William & Mary. I am studying Public Policy with a minor in Public Health and hope to one day become a doctor.  CURE provided many of their services to my family when I was younger, and I thought that interning would be a great way to give back and help families that are facing similar situations as mine did. I am so thankful for this opportunity and cannot wait to work with the team here!

Hi! My name is Ella Rickett (right) and I’m a senior at Keuka College, currently working on earning my degree in Child and Family Studies. Each year, I have to complete an internship of 140 hours, and decided that I wanted to look into nonprofit organizations… so here I am! I am super excited that I was able to find CURE and now I am ready to learn about what happens “behind the scenes” and partake in different events. Even though I have only been here a few days, I can tell that this organization plays a big role within the Rochester community and I’m so fortunate to have the opportunity to be a part of it!

Free CURE Programming and Events

There will be a Parents Night Out in July! Check our Facebook page for more information!

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.

Thank you for your support!

Thank you so much to WNY Auto Sales who held a fundraiser for CURE! They raised $2,000 for our families! We are so appreciative of the endless support in the community!

One of our awesome families put together over 100 of these Comfort Packs for other kids to use while in the hospital or at home! You can heat them up or freeze them and use them for pain relief or just something warm to hold and all have different fun patterns. We are so thankful to have such caring families who are always thinking of others!

Thank you so much to our friends at Nosh and Bitter Honey who held a Night of Tacos and donated a portion of the ticket sales to CURE!

THANK YOU to our amazing volunteers who returned to CURE yesterday for United Way of Greater Rochester‘s 2018 Day of Caring. Employees from ThomsonReuters and Paychex once again put their love and hard work into our Julie Roberts Children’s Memorial Garden and it looks amazing!

Upcoming Fundraisers

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!

To donate online visit: curekidscancer.com/donate

Our friends at Embrace the Difference have a wide selection of beautiful pieces with one sure to be perfect for the Mother in your life! Be sure to check them out. CURE will receive a donation for your purchase, just be sure to let them know you support us!

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!


We Want To Hear From You!

Join Our Team!

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

If you are interested, please email andrea.shaffer@curekidscancer.com or 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!
  • Travel sized toiletries: Deodorant, toothpaste, toothbrushes (singular), shampoo and conditioner
  • Wicker or plastic baskets
  • Small pocket/purse-sized calendars
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Paper towels and toilet paper
  • Items for teens or young adults
  • Toys for kids under 5 years old

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


Bereaved Families Corner

Father’s Day After a Child’s Death
By David Roberts

When life progresses according to the human laws of the universe, much beauty can be discerned from that progression. But what happens when life does not go according to plan? What if an event so catastrophic occurs, that it alters the natural laws of the universe and changes the way that we view the world?  What if that event also causes us to question the values and assumptions that we once held so near and dear to our hearts?

I am one of many parents in our country whose life plan has been altered by a catastrophic event. My daughter, Jeannine Marie Roberts, was diagnosed with a rare and aggressive form of cancer in May of 2002, three weeks after giving birth to her daughter and my only grandchild, Brianna. Jeannine died at home, at the age of 18 on March 1, 2003, just 10 months after she was diagnosed. Jeannine never had the opportunity to be a mother to her daughter; cancer suddenly and unceremoniously entered the equation. The unconditional love that my wife Cheri and I showered our daughter with was simply not sufficient to ensure that she would outlive us.

During early grief, holidays were particularly difficult for me to manage. My memories of Jeannine became more frequent during the days leading up to the holidays, and as a result my pain became more intense.  The holidays could never go by fast enough. Father’s Day was in many ways my toughest holiday to endure.

In the beginning of my journey, Father’s Day was associated with many raw and painful triggers. While I am blessed with two great sons, Jeannine was my only daughter, and Father’s Day was a constant reminder of many experiences that we would no longer share. There would be no more father-daughter lunches, no more rock concerts and no more of her beautiful smile to brighten up my day. Father’s Day was also a reminder of lost future dreams. I would never get the chance to walk Jeannine down the aisle at her wedding or share that ceremonial father-daughter dance at her reception.  I would not have the opportunity to watch her have more children or grow as a mother and as a companion to her significant other. I could go on and on, but I think you get the picture.

Father’s Day was not bittersweet, it was just bitter.

Today, I do not dread Father’s Day like I did early in my grief, nor do I experience the raw emotion associated with it. I believe that one of the things that has helped is my realization that Jeannine is still my daughter and that I can still have a relationship with her. That relationship has been strengthened in part by the signs that she has given me of her presence. The most emphatic sign that I received from Jeannine was during Father’s Day in 2009. I was doing some work on the computer when my wife Cheri told me that there was a double rainbow outside. She believed it was Jeannine’s Father’s Day gift to me. I did as well, because I had been thinking about Jeannine earlier that day. Plus, I have learned that the signs we receive are usually a product of what is happening with us in the present moment.

What has also helped soften the pain of Father’s Day is the conscious decision I made to embody the best qualities of Jeannine in my own daily life. Doing this has allowed her essence to become a part of everything I do and every holiday that I celebrate, thus softening the pain that her physical absence can bring.

Maintaining a relationship with Jeannine by embodying the best of who she was has also allowed me to stay connected to her. Because of my change in perspective about life and death, Father’s Day (as well as other holidays), no longer brings me to my knees.

Here are some other suggestions for activities that can be helpful for fathers to stay connected and to honor the legacies of their deceased child on Father’s Day. I believe these suggestions can also apply to anyone dealing with the challenges presented by the death of a loved one during any holiday:

  • Plan a family gathering to share stories and memories of your loved one. Our loved ones come alive through the stories that we share.
  • Write a special prayer about your loved one and say it to yourself or out loud. Also, if you choose, create your own special ceremony or ritual. On Jeannine’s angelversary date this year I wrote a prayer for her using Native American influences, burned incense and played music. During my ceremony, I gave Jeannine permission to grow outside of our relationship so that she could share her wisdom with others who are struggling with life’s challenges. I felt empowered and at peace during and after my ceremony.
  • Plant a tree or start a garden. In our backyard, we have a mommy’s garden that my wife Cheri designed to honor Jeannine as our daughter and also as mother to her daughter (our granddaughter.)
  • Volunteer at a local organization that had meaning for both you and your loved one. I am a volunteer for Hospice and Palliative Care, Inc. in New Hartford, New York. Jeannine had Hospice Services during the last 10 days of her life. They provided amazingly compassionate care to Jeannine and to our entire family.
  • Release biodegradable balloons or sky lanterns that contain messages from you, family and friends to your loved one. You can do this alone or in the presence of others.
  • Find some old magazines and invite family and friends to make a collage of pictures and words that remind you of your loved one.
  • Light a special candle.
  • Make a donation to a favorite charity or cause in memory of your loved one.  The amount does not matter – even a small amount towards a meaningful cause can be a wonderful gift.
  • Perform a random act of kindness for somebody. The act can be as simple as holding a door open, or letting a car in front of you in traffic. The warm feeling that you get from doing this may put a smile on your face and give you a brief respite from your emotional pain.

The activities that you choose to honor your deceased loved ones on Father’s Day and on any day of the year should be those that uniquely connected you to your loved ones during their life on earth. There is no human law that governs what rituals or activities we choose; it is sacred and personal law that rules.

Find the article here

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

Due to the holiday the next meeting is July 11, 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.