CURE Childhood Cancer Association

January Newsletter

A note from our Executive Director

Happy New Year!
As we welcome 2019, we’d like to also invite you all to a year-long beach party with CURE. That’s right, we are asking you to “Seas the Day” with us (see what we did there? 🙂 ) Throughout 2019, we will be incorporating one of our favorite places – the beach – into our events and activities. The beach is a peaceful place, a place to rest and relax, a place to create memories…we hope to bring these same feelings to you and your families throughout the year.

2018 was another challenging year for CURE. While the average number of children we typically have added to our CURE family annually is 50, this year saw 65 new children added.
Sadly, we’ve lost 13 children this year.

The support of our community gives us the opportunity to help families.
This year, we have distributed over 7,600 parking vouchers to families at Golisano Children’s Hospital and Wilmot Cancer Institute.
More than 915 food vouchers have been distributed to families to assist with the purchase of meals at the hospital as well.
Our Parent Advocates have made nearly 3,000 visits to families in the hospital – both inpatient and outpatient clinic.
This holiday season, 50 families received some level of support – whether through our friends at Anna’s Wish Foundation, private sponsors or the CURE Shop.

WOW. Just wow.
We couldn’t do this without you. Every “Like” or share on social media. Every time you tell someone in your network about us, our mission and what we do. Every minute you spend volunteering. It all matters. And it all helps us to alleviate parents and families of their burdens at an especially trying time. We’ve done this together.
I can’t wait to see what we do together in 2019.
I can’t wait to “Seas the Day” with all of you.

Spotlight On….

Odin was diagnosed with an aggressive form of Brain cancer ATRT or Atypical Teratoid Rhabdoid Tumor in November 2017. Shortly after diagnosis, he underwent a craniotomy which successfully removed the tumor. He then went through 28 rounds of sedated radiation therapy. Other treatments included 5 rounds of high dose chemotherapy, a stem cell harvest and since received 3 auto stem cell transplants. 

Currently, Odin is in remission and goes for MRI scans every 3 months to make sure he stays tumor free.  

Throughout all of those grueling treatments and procedures, Odin has always maintained his infectious energy and extreme love for dinosaurs. He is the light of his family’s lives. 

End of Chemo Bell Ringings

A huge congratulations to our friends who rang the End of Chemo Bell this month:

Jacob – click here to see a video of his bell ringing

Free CURE Programming and Events

Who:        Parents, caregivers and young adults

Where:    The CURE Office
                    200 Westfall Rd.
                    Rochester, NY  14620

When:    The fourth Wednesday of every month
                  (January 23rd, 2019)
                  6:30-8:30 pm

What:     We will be starting this Book Club in January 2019 in an effort to bring our families together to promote community connection, self-care and hopefully a lot of laughs.  We are hoping that individuals with similar journeys will not only enjoy the books, but also, create everlasting connections for the future.  I will be emailing a link for every book monthly to all participants so everyone can review it.  Light refreshments will be provided.

January Book:  Eat Cake.  Be Brave. by Melissa Radke

Please RSVP to Adella Ivison at

Adella.ivison@curekidscancer.com

by January 7th, 2019

Keep an eye open for more details regarding our Parents Night Out!

Want more information?  Contact our Program Coordinator Adella Ivison at
Adella.ivison@curekidscancer.com

Save the Date for our Annual Survivors’ Day Picnic!

Want more information?  Contact our Program Coordinator Adella Ivison at
Adella.ivison@curekidscancer.com

Our Brick Laying Ceremony will be held on Wednesday, May 1st at 6:30pm.  Our Bereavement Group will meet directly after the ceremony. 

Want more information?  Contact our Program Coordinator Adella Ivison at
Adella.ivison@curekidscancer.com

Upcoming Fundraisers

It’s almost that time of year again!  Our Million Penny Drive is a fun way for students to get involved with CURE!  It’s really simple…once a school decides to participate, we drop off the jugs, and then staff and students bring in their pennies and other loose change.  Some schools even make it a competition between classrooms!  If you are interested in learning more about the program, how to have your child’s school participate, or would like to sign up for your school or organization (that’s right…the program is open to more than just schools!) to participate in the drive, please contact our Community Coordinator Bridget at bridget.sadler@curekidscancer.com.

Save the Date!!

Start forming your teams and join us for the 10th Anniversary of our 5K & Fun Walk presented by our friends at The Cornerstone Group of Wells Fargo Advisors.  We have a number of exciting changes and additions this year, including our new host: I-Square!  Be sure to follow us on Facebook and Instagram as we reveal more contests, challenges, and details.  Help us “Seas the Day,” and make 2019 the best year yet!  Registration opening soon…

Want more information about setting up a team, or ways to get involved?  Email our Community Coordinator Bridget Sadler at bridget.sadler@curekidscancer.com for more details.

Section V Senior Select Hockey Game

On March 12th, 2019, CURE Childhood Cancer Association will be hosting the 32nd Annual Monroe County High School Hockey League William J. Quinlan Memorial Senior Select Hockey Game at Bill Gray’s Regional Iceplex. This game features Section V’s top seniors as they suit up one final time to represent their high school programs.  Each year, the high school Booster Clubs purchase ads in our Souvenir Program in support of their players and CURE, and the selected seniors purchase tickets to the game.  All proceeds from the game go to CURE, so we cannot thank Section V Hockey, the coaches, players, families, and Booster Clubs enough.  New this year, we will be preselling shirts for the game with the selected seniors’ names listed on the back.

Want more information about the game, to purchase a ticket, or know a business that might like to purchase an ad in the program?  Visit https://curecca.ejoinme.org/seniorselect19 or email our Community Coordinator Bridget Sadler at bridget.sadler@curekidscancer.com

We are very excited to be partnering with Air Affair this year!  They are offering a 10% discount to CURE families and friends when you use the code “CURE” for rental.  They also will be donating 10% of the total after the discount back to CURE.  Click here to visit their website.

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!

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!

Check This Out:

Northwestern Mutual is offering two scholarship opportunities for Childhood Cancer Survivors and Siblings.

Check out the full details and apply by clicking the links below:

Survivor

Sibling

Thank You for Your Support!


Thank you so much to Santa-Rocs! Santa and Elf Rissa stopped by the office and spent some time with some of our CURE kids!  Santa brought a gift for everyone, and read a special story while the kids enjoyed pizza, cupcakes, and Santa’s favorite…cookies! This was one of our Live Auction packages at our Recipe for a CURE Sunday Brunch, which was purchased and donated back to us by our friends Leo and Cindi Spezio. Thank you!!

Thank you to Nosh, for hosting our Tacky Sweater Party, The Bonadio Group for being our presenting sponsor, and Honeoye Falls Distillery for helping craft some delicious drinks and donating their product!  Nosh and Honeoye Falls Distillery also donated the prizes to our winners of the Tacky Sweater contest! Check out our winners’ sweaters pictured above.

Thank you to Olivia of ROC pen + INK for donating over 50 ornaments for our Tacky Sweater Party!  She also donated her time at the party to customize ornaments, and sell additional ornaments, donating all the proceeds back to CURE! Be sure to check out her work – it’s absolutely beautiful and available for purchase!

Thank you to BENTE 2419 and Council 66 for all the incredible work they put into organizing the most amazing Holiday Party for our families!  This is a family favorite event that everyone looks forward to each year!

Thank you to everyone that sponsored a CURE family, donated toys, clothing or food, or volunteered this holiday season!  We cannot thank you enough for your kindness and support.  Thank you for helping us ensure our families had a wonderful holiday season!

Thank you to all our Holiday Heroes! Your contributions made a difference and it is truly our honor to recognize the special people in your life.
Check out this year’s edition here.

Thank you to Bill and Judy Dillon for their generous donation to CURE!  They donated a portion of the proceeds from their annual golf tournament, which has been occurring for nearly 30 years!, memorializing their son Mark.

Thank you to Sathya Sai International Organization (SSIO) of Rochester, Buffalo, Syracuse, and Ithaca!  They put together and donated 49 bags filled with comfort items and food for our families during the holidays.

Thank you to Julianne’s Journey to Christmas Joy for their incredible donation of toys!  Each year, they make a donation to CURE in memory of their sweet girl, Julianne Miller.  In an effort to bring joy back to the Christmas holiday, the Miller family started a holiday toy drive to give back to other families on similar journeys.

Thank you to AP Professionals of Rochester for their generous sponsorship of a family this holiday season!

Thank you to Kodak Alaris for their donation of toys for our kids!  Brandy rallied her colleagues in the IT Department to help collect gifts after being inspired by the journey of one of our kids. 

Thank you to Batavia Downs for thinking of us this holiday season!  They sent over these adorable stuffed animals for our kids with one of our CURE kids’ mom, Deb. What a thoughtful way to remember Buddy!

Thank you to the IT Department at ESL for donating food items and gift cards for our families this holiday season!

Thank you to Hatsgiving for their generous donation of hats for our CURE families!  Look at all these awesome hats! Our kiddos will be nice and warm all winter long because of your kindness.

Thank you to Fight Club of Rochester for their generous sponsorship of a family this holiday season!

Thank you to Florence Kinney and “Santa’s Workshop for Hospitalized Children” for their incredible donation of toys and sweatshirts for our kids! She has been coordinating this gift-giving program for many years in the Rochester area.

Thank you to Alex and Ani at the Culver Road Armory for hosting a Charmed by Charity event on December 3rd! And a very special thank you to the friends of CURE who shopped the event, raising money for our families and getting some beautiful jewelry, too!

Thank you to Anna’s Wish for their sponsorship of CURE oncology families!  You’ve helped to ensure families coping with a childhood cancer diagnosis had a nice holiday and had the stress of shopping for gifts for their families lifted.Thank you for your partnership.

We Want To Hear From You!

To learn more about how you can help, contact Bridget at:
bridget.sadler@curekidscancer.com

Join Our Team!

We are currently looking for interns for Summer and Fall ’19!!

If you are interested, please email staff@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 Adella.Ivison@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
  • Weighted blankets
  • Essential oils
  • Mini diffusers
  • Paper towels and toilet paper

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


Bereaved Families Corner

How to help: 4 things to say to bereaved parents… and one thing

NEVER to say

What do you say to a mom or dad who has suffered the ultimate heartbreak?

By A. Pawlowski

What do you say to a mom or dad who has suffered the ultimate heartbreak?

As a mental health professional and twice-bereaved parent, Dr. Gordon Livingston knows the issue all too well. The Columbia, Maryland, psychiatrist lost his 23-year-old son Andrew to suicide in the early ‘90s. Just over a year later, his 6-year-old son Lucas died from leukemia.

Livingston watched as friends and acquaintances struggled to address him. When faced with such deep sorrow, people will often blurt out well-meaning but awkward, insensitive phrases like “He’s in a better place,” “Everything happens for a reason,” or “You’re lucky to have other children,” he said.

“No one knows how to react. There’s nothing they can do so they come up with these meaningless platitudes… that are either dishonest or carry with them no consolation whatever,” Livingston told TODAY Parents.

“People are extremely uncomfortable and you find people avoiding you in grocery stores. It’s as if [the bereaved parents] were carrying with them some contagious disease.”

As October’s Pregnancy and Infant Loss Awareness month kicks off, Livingston and Deb Kulkkula, who founded July’s Bereaved Parents Awareness Month in honor of families trying to cope after the death of a child, suggested these four things to say or do for a grieving parent:

1. “Do you want to talk?”

Don’t shy away and don’t keep your distance.

“What works is your presence. There’s no set of words that will work each time, but being there for someone in a supportive way is what provides the most consolation,” Livingston said.

Bereaved parents need to be able to talk, so look for ways to open up the conversation and give the mom or dad a chance to speak, said Kulkkula, who lost two adult sons. Check on parents regularly so that if they want to talk, they can.

2. “I remember the time when…”

Don’t avoid mentioning the child who has passed away, Livingston said. In fact, the silence of people not mentioning her late son’s name can be “deafening,” a St. Louis mom wrote in a powerful essay for Bereaved Parents of the USA. Like many parents who have lost a child, she craved hearing his name and stories about him.

Kulkkula and her husband loved it when people shared anecdotes about their late son.

“With most people, it’s their own discomfort that stops them from talking about it with the family. So unless a parent tells you, ‘I can’t talk about him or her now,’ please talk about their children,” she said.

3. “I gave to his memorial fund”

Bereaved parents are often afraid their children will be forgotten, Livingston said. One of his friends set up a memorial fund for Lucas and each year on the anniversary of the boy’s death, there’s a contribution.

“That sense of continuing and remembrance goes a long way,” he noted.

Kulkkula found it comforting when her church started a scholarship fund in memory of her late son.

4. “I mowed the lawn”

An open-ended offer — such as “I’ll do anything, just let me know” — likely won’t work because the bereaved person won’t want to ask for help, Kulkkula said, or might not even know what they need. Rather, make it more specific, such as “I’m bringing you a meal tonight, I’ll be there at 6 o’clock.”

Livingston is still appreciative that after his youngest son died, somebody just showed up and mowed his lawn.

And the one phrase never to say: “I know how you feel”

This is the No. 1 phrase to avoid when consoling a grieving mom or dad.

“It’s not permitted to say that to a bereaved parent unless you are a bereaved parent,” Livingston said. “It betrays such a lack of understanding of what the bereaved parent is going through.”

People are sometimes tempted to list their own periods of grief — the death of their grandmother or a beloved family pet — as a way to sympathize, but those are not equivalent losses, he noted.

“To try to explain to people that this is the kind of loss that transforms you into a different person, that you will never be the same person you were before this happened, is almost impossible.”

Support

Bereavement Group:

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

The first Wednesday of each month

Hosted by Bereaved Parents Liz Conrow & Deb Zalar and Parent Advocates Kiersten Kunick & Adella Ivison

200 Westfall Road, Rochester 14620

From 7:00pm-8:30pm

No reservations required


ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

6:00pm-7:30pm

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.

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.