CURE Childhood Cancer Association

February 2019

A peek at our Programming…

Sibling Voyage Beads!

The CURE Voyage Beads are a visual way for CURE children to record their voyage through treatment.  Beads of various colors and shapes, each representing a particular treatment or procedure, are strung on a cord.  Children will add beads as they go through treatment and will build a tangible documentation of their journey.  We at CURE recognize that this journey is not only for the patient, but for the entire family.  With that in mind, CURE introduced the Sibling Voyage Bead Program in June 2018.  Similar to the original Voyage Bead Program, it is designed for the sibling of a Pediatric Hematology/Oncology Patient to feel connected to their sibling while their sibling is going through treatment.  Participation in the Sibling Program is completely voluntary and free of charge for CURE families.  If you have any questions regarding this program or if you want to participate, please feel free to contact our Parent Advocates, Kiersten (kiersten.kunick@curekidscancer.com) or Adella (adella.ivison@curekidscancer.com).

Spotlight On….

Vivian is a loveable 8 year old. She loves gymnastics and dancing and being a typical little girl. She was diagnosed with a Medulloblastoma in April 2018. She had three surgeries, one of which caused her to have posterior fascia syndrome. This caused stroke like symptoms and Vivian was unable to speak, eat and do many of the things she loved to do. Her journey through rehabilitation has been astounding. She now has the ability to eat and talk again. However, she is still limited in certain areas. Vivian’s progress continues to get better and better. She is a very positive strong young lady. Her amazing personality has touched the hearts of others even in her silence. We are blessed to have such a wonderful little girl.

Our Most Sincere Condolences

Our sincere sympathies go to the family of:

Philip – 12/28/2018

Winter Interns!

Hi, I’m Allie! I’m a senior at SUNY Brockport, and I’m originally from Syracuse. I have grown to love the Rochester area and am really excited to have this internship opportunity at CURE! Not only do I get to be more involved in the Rochester community, but I’m excited to gain experience at CURE being able to work with the families and friends that are involved here. Mariah and I will be working on the Penny Drive, so make sure you’re staying up to date on our progress!

My name is Mariah. I am a senior at SUNY Brockport majoring in Public Health. I am super excited to be a part of the CURE team this Spring. I can’t wait to dive into all of our upcoming events like the Penny Drive and the 5K. Being involved with the community is a passion of mine and I am grateful for this opportunity and experience. Be sure to check us out on social media for pictures and updates of our work here at CURE!

If your school or business would like to participate, feel free to reach out to us at staff@curekidscancer.com!  We really look forward to being a part of the CURE community and being able to work with all the families and friends that are involved!

Free CURE Programming and Events

Join us for our monthly Book Club !!

Held the 4th Wednesday evening of each month @ 6:30 PM

CURE Office (200 Westfall Road)

Open to Parents, Caregivers, and Young Adults

The group enjoyed January’s book Eat Cake. Be Brave. by Melissa Radke
and are looking forward to discussing February’s selection I Might Regret This by Abbi Jacobson on February 27th. Light refreshments will be provided!

Please contact Program Coordinator Adella Ivison at Adella.ivison@curekidscancer.com with questions and RSVP’s!


Winter Break Fun at Gilda’s Club February 2019!!!

Monday February 18th 11:30-2pm

Calling all Junior Chefs!  We need kids in the kitchen!  Join Adella, JJ (from Gilda’s Club) &Professional Chefs to create a one of a kind lunch for you and your family.

The kids will be preparing a delicious meal of tacos!

*Co-Sponsored with CURE Childhood Cancer Association

Space is limited.  Please RSVP with Adella at 585-473-0180 or Adella.ivison@curekidscancer.com by 2/13/19

PARENTS’ NIGHT OUT
(postpone your Valentine’s Day date and enjoy time together dancing!!)

Who: Free to CURE parents! 

Where: Fred Astaire Dance Studio
1855 Monroe Ave. (next to Panache)
Rochester, NY  14618

When: Friday, February 22nd, 2019
7:00-9:00 pm 

What: Ready to get your dancing feet all warmed up? Join us for CURE’s Parents’ Night Out Dance Lesson! Get ready to have a great time! Dancing is a MUST!! 

Limited room available.  First come, first served.

* bring a separate pair of shoes for lesson*

Please RSVP to Adella Ivison at

Adella.ivison@curekidscancer.com or call 585-473-0810

Couch to 5K

When: February 11th at 7pm

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

The CURE 10th Annual 5K and Fun Walk presented by The Cornerstone Group of Wells Fargo Advisors is coming up fast!

Have you ever wanted to participate, but didn’t feel like you were in shape to do so?

We have your solution!

This year, with the help of our friend Andrew, we will train to participate!

It doesn’t matter if your goal is to run or simply walk the 5K, we are here to help.

You must RSVP with Adella at:

585-473-0180 or Adella.ivison@curekidscancer.com

*  please consult with your doctor before starting any new exercise routine  *

Thank You for Your Support!


Thank you to our wonderful friend Julie and her daughter Darcy for donating 130 pillowcases for our CURE kids!  Julie makes and sells these incredible pillowcases on Etsy, and for every one sold, she donates one to children with cancer.  Be sure to check out her page at Pillowcases for Cancer.  Thank you Julie and Darcy!!

Thank you to the Byron Bergen and Elba Boys Basketball Teams for hosting the Battle of 262 Fundraiser!  They raised thousands of dollars between their JV and Varsity games and will be donating the money to CURE and Ronald McDonald House Charities of Rochester.

Thank you to our volunteers from University of Rochester’s King for a Day!  They spent a Saturday afternoon helping us organize and move things around our office.  Thank you so much for all of your help!

Thank you to all the teams that have registered so far for our 10th Annual 5K & Fun Walk presented by The Cornerstone Group of Wells Fargo Advisors on Saturday, April 27th!

Thank you to all the teams registered already for our 5th Annual Trivia Night on Friday, March 1st!

Upcoming Fundraisers



Check out this awesome day of live music at the Burgundy Basin on Saturday, February 2nd.  Organized by Voices that Care, bands will be performing from 1pm-1am.  A portion of the door money will be donated to CURE.

Find more information regarding the event by clicking here.


Think you have what it takes to be crowned Trivia Champion?  Join us for a night of fun Friday, March 1st as we host our 5th Annual Trivia Night!

Click here for more information and to purchase tickets!

Seas the Day with us in 2019!

Designate to CURE through the United Way campaign (#1028) 

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

Join us Saturday, April 27th at I-Square for our 10th Annual 5K & Fun Walk presented by The Cornerstone Group of Wells Fargo Advisors!  Start forming your teams and make sure to check out all our contests and challenges – including the new High School Challenge and High School Athletic Team and Club contest!  Click here for more information.

Register now to make sure you receive your race t-shirt!  T-shirts will be given to all participants registered by April 10th.  Click here to register!

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.

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.

Be sure to mark your calendars and save the date for our 4th Annual Patrick Carr Memorial Tournament presented by Brighton Securities.  Registration opening soon…


Join us Saturday, April 6th as the Rochester Knighthawks host their Cradle for a CURE game.  More details coming soon…

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 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.

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!


Have you ever wanted to be more active with us?
 

We are looking for those interested in participating in the  

Volunteer Committee

or the

Program Committee

If that’s you, please contact Adella for more information at:  adella.ivison@curekidscancer.com

Garden Clean Up

After winter, our beautiful Memorial Garden needs some tender care.  Please sign up and help us keep the Julie Roberts Memorial Garden a beautiful place for everyone to enjoy.  Please sign up here and feel free to pick any time and day, within each week that is available, to sign up.  Thank you!

Location: Julie Roberts Children’s Memorial Garden

200 Westfall Rd., Rochester, NY 14620

Sickle Cell Advocacy Day

On Tuesday 3/12  the NAACP New York State Conference will have its lobby day in Albany. Since the NAACP NYS Health Committee Agenda on Lobby day will be sickle cell, it’s a great opportunity to join forces with them for the Sickle Cell Advocacy Day. The Roc City Sicklers’ goal is to have a minimum of 150 individuals from New York City, 50 from Rochester and 50 from Albany to attend. Working together we can make this happen.

Buses will be provided for Rochester participants, FREE of charge. However, if you are able to drive, you may submit your gas, tolls and parking receipts for reimbursement. FOOD will not included. 

We will have a list of Legislators and will be working with the NAACP to schedule appointments so you can visit and share your stories and request support for funding sickle cell  from your respective legislators. 

Please Let me know if you are interested in attending. NEED your name, your phone number and anyone else that you would be attending with you. 

The bus locations will be disclosed once we’ve reached out head count…..

Thank you,
Gladys A. Magee
Gladys_Magee@URMC.Rochester.edu

Information from the Leukemia and Lymphoma Society: 

The Leukemia and Lymphoma Society Society has re-opened several Copay funds. AML, MDS, WM, Lymphoma and MCL funds are open. 

As always funding is limited. They will likely close quickly due to high demand. You can apply by calling (877)557-2672.

Remember that our Patient Aid fund is available to all blood cancer patients and can be taken advantage of even if patients are enrolled in any of our other grants. This is a $100.00 grant per patient and is given to all who apply. Details can be found at: http://www.lls.org/support/financial-support/patient-aid-program

Speak with an information specialist who can assist you through treatment, financial and social challenges and give up-to-date disease, treatment and support info | 800.955.4572

Young Adult Cancer Survivor Grant Information:

 The Samfund is excited to announce that the application for our next grant cycle is NOW available through February 12, 2019!

The Samfund Awards direct assistance to young adults who are struggling financially because of cancer. Our grants cover a wide range of needs, including medical expenses, living expenses, insurance premiums, family building costs and much more.

Who is eligible?


Young adult cancer survivors who are eligible candidates must be:

Between the ages of 21 and 39 at the time when the application is submitted

Residents of the United States

Must meet ONE of the following criteria:

Completed planned treatment with no evidence of disease, or

One year following the completion of planned treatment with stable disease, or

In remission and on long-term hormonal therapy (such as Tamoxifen for breast cancer survivors) or long-term targeted therapy (such as Gleevec or Herceptin)

Individuals who have received grants in the past may reapply and may receive up to three separate grant awards. Anyone who received a grant in Fall 2019 must wait until July 2019 to reapply.

Important dates

 Wednesday, January 16th at 9AM EST: The link to the grant application, which must be completed online, will be posted on our grants page.

Tuesday, February 12th at 5PM EST: Deadline for all submissions. No exceptions or extensions!

Mid-late April: All applicants will be notified if they’ve been selected to receive funding.

Thank you, and please email grants@thesamfund.org with any questions!

 

We Want To Hear From You!

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

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.

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



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
  • Small pocket/purse-sized 2019 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


Coping with the loss of someone or something you love is one of life’s biggest challenges. Often, the pain of loss can feel overwhelming. You may experience all kinds of difficult and unexpected emotions, from shock or anger to disbelief, guilt, and profound sadness. The pain of grief can also disrupt your physical health, making it difficult to sleep, eat, or even think straight. These are normal reactions to significant loss. Remember, there is no right or wrong way to grieve.

At CURE Childhood Cancer Association, we are here to help.  We have two families available to speak with bereaved families.  They are bereaved parents who lost children to childhood cancer and are available the first Wednesday of every month from 7-8:30 pm for a Bereavement Group at the CURE Childhood Cancer Association office at 200 Westfall Rd. Rochester, NY  14620

If you would like to talk with a group that understands better how you are feeling and be able to share memories that you cherish, please feel welcome to come.

Support

Bereavement Group:

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

The first Wednesday of each month

Hosted by Paul & Liz and Deb

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.

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