CURE Childhood Cancer Association

March Newsletter

CURE main logo pic

A Message from the Executive Director

And just like that, it was March…

2016 was an important year for CURE Childhood Cancer Association. We celebrated 40 years of providing assistance to families during some of their toughest days. Some of the highlights from our year include:

  • Expanding the Parent Advocate program to two individuals
  • Providing new programming, like “Parents’ Night Out” and joint programming with like-missioned organizations (stay tuned for even more in 2017!!)
  • Providing nearly $10,000 in emergency financial assistance to our families, including funeral expense assistance
  • Recognizing our early families and founders through a luncheon the day before the Brunch, including a timeline of CURE’s history. Some Founders reconnected with CURE after many years and traveled from all over the country to be here.

We are so lucky to have the support of our community. I know I say this often, but we could not do what we do without all of you. I ask of all of you to continue to advocate for CURE, share our social media posts, participate in events, volunteer…there’s not a lot of fanfare to what we do. The services we provide are not glamorous, but they are services that are essential to our families. They are important services that our families need. Thank you for helping us get as far as we’ve gotten. I invite you to continue advocating with us.

In sticking with the lucky theme, I want to leave you with an Irish Blessing:

May your blessings outnumber
The shamrocks that grow.
And may happinesss follow you
Wherever you go.

Spotlight On Eric

Our journey with CURE began in October 2016.  During a routine physical in July, Eric mentioned to his pediatrician he felt more tired than usual.  From there, Eric went for routine blood work which revealed ‘Global Bone Marrow Failure’- meaning his blood counts were abnormally low.  The next day we met the specialists at the Children’s Hospital who scheduled the first bone marrow biopsy.  We were relieved to hear the preliminary results were negative for leukemia and the team most likely suspected Aplastic Anemia.  We held on to that diagnosis until the results of the biopsy.  Unfortunately, the results were concerning for Myelodysplastic Syndrome (MDS) and required a second biopsy which confirmed the diagnosis.  We had come to understand the curative treatment for Aplastic Anemia was a Bone Marrow Transplant so we started the process of having Eric’s sister, Alyssa evaluated for a potential donor.  MDS is technically a blood cancer, the treatment still required the bone marrow transplant- however the sense of urgency became much more significant.  Fortunately for Eric, his sister was a perfect match.  He was admitted in October, started is chemotherapy, and received his transplant on October 12, 2016.  The first days were overwhelming, CURE was (and still is) an amazing support for us.

Fast forward to ~ day + 140 Eric is doing amazing.  He turned 16 during his recovery and is learning how to drive.  He is also back to school and starting to play soccer again.  He is looking forward to the day when he no longer needs to take maintenance medications and takes great pleasure in negotiating with the providers about the doses.  If everything goes per the plan he will be off his medications between 9 months and a year.  Eric has demonstrated resilience during this difficult time and has appreciated the support from friends, family, and staff.  Eric’s team has respected his sense of humor, candor, and wit throughout this journey.

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Bell Ringing!!

Congratulations Aiden!!! 

  

On February 1st surrounded by his parents, Aiden rang  the bell of hope signifying his last chemo treatment at Golisano Children’s Hospital at Strong!

Meet our new Program Coordinator Sam!

 

Sam joined CURE on March 1, 2017, with two years’ experience working in non-profit. Previously she was a Communications Coordinator and Grant Writer for Center for Disability Rights. She is a graduate from SUNY Oswego where she studied Public Relations. In her free time, she loves to figure skate and is a part of the Genesee Synchronized Skating Team here in Rochester. She also has two cats that she adores.  She is incredibly excited to be joining the team and looks forward to contributing to the important work done by CURE. Welcome Sam!

Focus of the Month

     

ConServe Jeans Day

Our friends at ConServe  hosted a jeans day for CURE. It was so easy and they raised $4,000!!! Thank you ConServe for your support to CURE!


Frisbee Tournament Fundraiser

In early February,  60 of Rochester’s ultimate frisbee players who are apart of GRADA – Greater Rochester Area Disc Association played in the 12th Annual Ultimate Bandanna Frisbee Tournament. They raised $1,000 for CURE!! Thank you so much for thinking of CURE and our families. You are amazing!


Headbands of Hope 

Heather and her daughter Gracie stopped by the CURE office to donate headbands from Headbands of Hope​ and beanies from Love Your Melon. Heather, who is a cancer survivor herself, is a Hope Representative( New York Wears Hope) for this incredible company. For every headband purchased from Headbands of Hope, one is given to a child with cancer. We are so thankful for this donation; we know our CURE kids will love these!

  



CURE Family Gives Back!  

Emilia and her sister Avery stopped by the CURE office to make a donation full of toys, blankets and stuffed animals. We are so thankful that they thought of other CURE families and wanted to give back. Thank you from the bottom of our hearts!  



CURE Bookfair

CURE received a very generous donation of over 6,000 books from customers of Barnes & Noble over the holidays. We held two bookfairs at the CURE office in January and February for CURE families to come and get books. 

  



Larry Masci Electric

CURE definitely felt the love on Valentine’s Day from our friends at Larry Masci Electric, Inc.. They donated 4 new IPads and covers for our CURE families to use when they are at the hospital! You are so wonderful!! We also got the sweetest visit from Angelina, who brought us a Valentine’s Day card signed by the whole office. We can’t thank you enough for your continued generosity!

    



CURE Kid Chefs

Over February break, CURE partnered with Gilda’s Club to put on a kids’ cooking class with Chef Dustin from Grappa at the Hilton Garden Inn and Chef DarLyn, the Chair of the Education Committee with the ACF Rochester. The kids learned how to make homemade meatballs, two kinds of pasta sauce and cannolis! Our CURE families had a such great time. Thank you Chef Dustin and Chef DarLyn for teaching them and to Gilda’s Club of Rochester for hosting!

   


Upcoming Events and Opportunities to Support:

8th Annual 5K and Fun Walk

Presented by The Cornerstone Group of Wells Fargo Advisors

OH THE THINGS YOU WILL SEE
IN LOWER SENECA PARK.

When: April 29, 2017

Where: Longhouse Shelter, Seneca Park

5k Run and Fun Walk kicks off at 9:30 AM

New for 2017!

Price for registration is $15.  This includes a CURE bracelet and CURE sunglasses.

Raise additional funds through donations and/or fundraising teams.  Your direct donation and those made to your fundraising page contribute to your level of reward*.

Raise: 
$30- receive a cotton t-shirt and CURE sunglasses 
$60- receive a tech t-shirt and CURE sunglasses 
$100- receive a hooded sweatshirt and CURE sunglasses

Register yourself and your team today by clicking here!

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Please read our latest blog post on why you should designate to CURE.
http://curekidscancer.com/the-united-way-campaign/

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30th Annual Senior Select Hockey Game

Dedicated to the loving memory of William & Margeurite Quinlan.

CURE Childhood Cancer Association will be holding its 30th Annual Select Memorial Hockey Game, featuring Section V’s top senior players. These players will face off in two games on March 18th beginning at 5:00 PM and 7:00 PM( Please note the time change) at Thomas Creek Ice Arena. Purchase your tickets here!

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You don’t want to miss out on this fun night of trivia! Purchase your tickets here!  

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CURE is marching in the St. Patrick’s Day parade on March 11th in downtown Rochester. We are looking for CURE families and friends to come and march with us. If you are interested please email Kim Collins at kim.collins@curekidscancer.com

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ROC City Sicklers Fundraiser

Join the ROC City Sicklers for great food at Panera Bread on

March 20th and March 23rd. We hope to see you there! 

 


We are currently looking for salons who are interested in partnering with CURE and participating in Cutting 4 A CURE which will be on June 11th. If your salon is interested and would like more information please email cutting4acure@gmail.com

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 8th Annual Anna’s Wish Fundraiser

When: March 10th from 5-8pm

Where: Rush Henrietta Senior High School

For more information visit https://www.facebook.com/AnnasWish/

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 Easter Egg Hunt

Our friends at AP Enterprises Property Services are hosting an Easter egg hunt for our CURE families!

When: Saturday, April 8th , 12:30-3pm

Where: White House Lodge Webster NY 

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Pampered Chef Fundraiser

We are pleased to share we are partnering with Marissa Pellegrini on a Pampered Chef fundraiser for CURE!! Orders must be submitted by March 27th. Check out the catalog!! There are LOTS of great things to choose from, plus you’ll be making a difference to our families. 

https://www.pamperedchef.com/pws/mpellegrini/guest-landing/9040776248475

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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!

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 at the hospital.

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 kim.collins@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

Facebook Live:

Kiersten Kunick, Parent Advocate, goes live on Facebook every Wednesday at 12pm.

She 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 and share! kiersten.kunick@curekidscancder.com

CURE Kids Corner


Bereaved Families Corner

(excerpt from “Grieving the Loss of a Child” from Healing Hearts of WNY)

Helping siblings who are grieving:

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’ve lost a family member, a confidant, and a life-long friend. Parents are often preoccupied with the needs of a sick child and then become overwhelmed with their own grief when the child dies. The surviving siblings may misinterpret the parents’ grief as a message that they are not as valued as much as the child who died. In addition, parents can help siblings during this time of grief by:

  • Making grief a shared family experience and including children in discussions about memorial plans.
  • Spending as much time as possible with the surviving children, such as talking about the deceased child, just playing together, or doing something enjoyable.
  • Making sure siblings understand that they are not responsible for the child’s death and help them let go of regrets and guilt.
  • Never compare siblings to the deceased child and make sure children know that you don’t expect them to “fill in” for the deceased child.
  • Set reasonable limits on their behavior, but try not to be either 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 from giving them the attention they need.

    (Click above to read more from Healing Hearts of WNY)


Our most sincere condolences…

the family of Elaina Webb, February 7, 2017


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.

ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

Next meeting is March 21,2017

6-730pm

Free parking provided by CURE Childhood Cancer Association

Food provided by Wegmans


Bereavement Group:

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

The first Wednesday of each month

Hosted by CURE’s Parent Advocate, Kiersten Kunick

200 Westfall Road, Rochester 14620

Next meeting is March 1, 2017

From 7-830pm

No reservations required


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.