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September is childhood cancer awareness month AND sickle cell disease awareness month!

What are you doing during September to raise awareness? We want to know!
We want to see a sea of gold and red during September. Share with us what you are doing to raise awareness. We will share on our social media platforms!
Here are some ideas on how YOU can easily help us raise awareness:

(1) Light up gold (pediatric cancer awareness) or red (sickle cell awareness)! Local stores sell yellow and red light bulbs. Change the light on your front porch to show your support. You can even purchase lights online using AmazonSmile and help CURE at the same time. Childhood Cancer Awareness Lights    Sickle Cell Awareness Lights
(2) Ask your local library, school or fire department to include that September is Childhood Cancer or Sickle Cell Awareness Month on their digital signs in front of their building for the month.
(3) Ask your school’s Athletic Director or Youth League Coordinator to paint a gold or red ribbon on the playing field! Teams can also host awareness games. Chat with the CURE staff on how we can make that happen and how we can help!
(4) Ask a local restaurant or bar to host a “Gold Party” or “Red Party” – Guests wear the color of awareness, drink and food specials centered around the awareness color.
(5) Wear a gold or red tie, ribbon or accessory throughout the month. Take a selfie and post on social media. Tag CURE and use the hashtag #GoldforCUREKids or #RedforCUREkids
(6) “Give awareness a hand” – Submit your handprint in either gold or red paint on paper to CURE (200 Westfall Road, Rochester, NY 14620) and include a brief description of why you think it’s important to raise awareness. These handprints will be on display at the CURE office during the month of September (So send your handprint in before the end of August to be included!!) PLEASE DO NOT INCLUDE NAMES ON THESE!!
(7) Host a bake sale at your place of work, noting that it’s to raise awareness (“Life without pediatric cancer/sickle cell disease would be sweet. Enjoy a treat and help us raise awareness!”) and donate the proceeds to CURE. The CURE Staff would be more than happy to help provide baked goods (as long as we have a little notice  ).
(8) Host a jeans day at your workplace where employees pay to wear jeans. Encourage them to wear the color of the awareness ribbon you are working towards. Donate the proceeds to CURE.
(9) Tie gold or red ribbons around your house, office, mail boxes, place of work, etc. to raise awareness.
(10) Sell paper awareness ribbons to patrons at your place of work. They write their names on them and a message of hope. Proceeds can be donated to CURE. We can work with you and provide the ribbons to be written on.
(11) Stop by the CURE office (200 Westfall Road). We will have gold and red ribbons you can wear during the month.
(12) We will be selling our lawn signs again, one for childhood cancer awareness month and one for sickle cell awareness month. These will be on a first-come, first-served basis. Once we run out, we are out. Pick up will be at the CURE office the week of August 28th. Reserve your sign online here: https://curecca.ejoinme.org/CUREawareness2019

(13) Help us with the 2nd Annual “Liquid Gold for CURE” challenge! Area restaurants will feature a SPECIAL mac and cheese dish for the month of September – because mac and cheese is DEFINITELY the most kid-friendly (and adult-friendly!), delicious food we can think of! Even better? It’s gold! We will feature the restaurants leading up to September and at the beginning of the month. Be sure to check them out and try their dishes! Every week, the number of special dishes ordered will be tallied and the winners get a TROPHY and a VIP table to the 11th Annual Recipe for a CURE Sunday brunch on September 29th!

Now that we’ve given some ideas, the creative and fun part starts! If you get your business involved in awareness and send us photos, we will promote on social media and in a special EXTRA edition of our newsletter in mid-October. We will tag your business on social media so everyone can see how you are making a difference in the community and partnering with our families!

Phew…that’s A LOT of options! We CAN’T WAIT to see how you are going to let our families know they are not alone!!! Are you as excited as us?! Tell us how you plan to “Paint the town Gold” or “Paint the town Red” ahead of time!

When you hear the words that your child has cancer a lot of things go through your head, and your whole life turns upside down. I was a first time mom I was prepared for maternity leave and then for Addy to be enrolled in daycare & I return back to work. I was not prepared to be presented with a treatment plan for my 3 month old to treat her cancer – a cancer that she was born with that was not genetic – it was like winning the lottery of bad luck.

With our amazing Oncology Dr. we reviewed and made a plan of treatment plan/protocol for Ewing’s Sarcoma. We got through it – when I first looked at this plan I was like how are we going to do this – mentally, financially etc. Addy had her port installed and the next day we had our first inpatient stay at Golisano Children’s Hospital. Everything was so overwhelming; I was handed a binder, a pamphlet of information of do’s and don’ts for cancer patients, an armful of meds and was also trained by a nurse using a stress ball of how to give my baby daily shots of Neupogen. This whole time I am thinking how am I going to get through this.

At some point during the beginning of our hospital stays immediately we met and signed up with CURE. (THANK GOODNESS FOR THAT!) We were welcomed with a tote of goodies – there were items in there for myself, and for Addy (the patient). I want to note that during this time I had to take a leave of absence from my job in order to give Addyson the attention and the best quality care that I could. This tote of goodies was just the beginning of CURE’s generosity and support. Throughout Addy’s treatment CURE provided our family with gas cards, parking passes, food gift certificates, food vouchers, groceries, borrowing an iPad to keep Addy busy during inpatient and many, many one on one talks and support. To our family the face of a CURE representative at the hospital not only meant a nice chat but evolved into ever lasting friendships and a family like bond. The ladies of CURE were always there for us to answer any questions that they could and because they have been through the same thing we were experiencing they knew how we felt which was important to us.

Addy started treatment Oct 25th 2018 and finished Aug 28, 2019. We have to go for scans, and visits to her Oncologist every 3 months until she is 5 years old. Even though we are through with her treatment CURE is still there to support us. The end of chemo bell ringing ceremony that is arranged and funded by CURE and the after party at the CURE office are just more amazing things that they do to support the cancer families – it makes the kids feel good and special – it is a big deal and we really appreciate that CURE does this for our family. We still get parking passes to every hospital visit thanks to CURE and it is so nice to not have to worry about paying for parking.

Addyson is doing really well she just turned 2 June 29. She goes to daycare and has made lots of friends and she is learning her colors, manners and does lots of arts and crafts. She loves to be outside to play in the snow or the sun!

Hello from Marleese! It’s been a busy month here at CURE. I really enjoyed helping out with the Patrick Carr Memorial Golf Tournament–it was a beautiful day and it was great to see so many people come out, have fun, and give generously to CURE! Now that the golf tournament is over, it’s really time to get ready for August’s big event: the Motorcycle Poker Run! I’ve been busy this month collecting raffle prizes for the Poker Run, and it looks like we’re going to have some fun items for people to win, so tell your friends to plan on coming out August 25!

Our most sincere condolences to the friends & family of:

Ruthie – 7/20

Food Bags for CURE Families:

We know it can hard to make ends meet over the summer with the kids home from school. We at CURE want to help! Please contact the office if you would like to stop by and pick up a food bag. We have staples like peanut butter and jelly and mac and cheese that we hope you’ll find helpful!
Please call the office (585-473-0180) or e-mail adella.ivison@curekidscancer.com to set up a pick up time!


It’s SHORE to be a good time. Come SEAS the Day with us!
Please RSVP to Adella.ivison@curekidscancer.com
Parents and Caregivers welcome!

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Invites You to:

Sickle Cell Educational Workshop and Community Forum

at 131 W. Broad Street   Rochester, NY 14614 – Conference Room A & B

for adults, advocates, social workers, physician’s, school nurses and the extended community supporting and those living with sickle cell

Saturday, September 7th, 2019

Registration begins at 8:30am

Workshop 9:00 AM to 1:30 PM

Topics:

   Sickle Cell 101 – Sickle Cell Disease & Trait

Stem Cell Transplantation

   Transition and adult care

   IEP based on 504 rehab act

   Community Health Work & Advocacy

   Celebrate Life: Living with Sickle Cell Disease

   Endari – What You Should Know

    Community Forum & Closing Remark.   Directions:131 W. Broad Street Rochester, New York 14614https://www.mapquest.com/us/ny/rochester/14608/131-w-broad-st-43.154026,-77.615652

A Light Breakfast and Lunch will be served

For more information email sickle.rochester@gmail.com or call 585-275-0798

Pre-register at https://www.eventbrite.com/e/sickle-cell-educational-workshop-and-community-forum-tickets-65418824465

 

RSVP is mandatory to properly prepare for lunch.

GRYT Health (“GRYT”), an award-winning, mobile app-based social community for people affected by cancer, today announced it will host the first-ever Global Virtual Cancer Conference (GVCC19) on October 5, 2019. GVCC19 will give patients, caregivers, advocates and healthcare decision makers from around the globe a “hands-on” opportunity to collaborate towards creating a new patient-centric framework, through a full-day of interactive virtual sessions hosted on the GRYT digital platform. The conference aims to elevate the voices of those who have been profoundly impacted by cancer, to ensure their critically important and valuable ideas and experiences are central to future healthcare innovations, legislation and decisions.
To register and learn more, please visit:
https://www.globalvirtualcancerconference.com/en/

Come join us for our

August Book Club

Wednesday, August 28th 2019

Mrs. Everything by Jennifer Weiner

In her most ambitious novel yet, Jennifer Weiner tells a story of two sisters who, with their different dreams and different paths, offer answers to the question: How should a woman be in the world? Mrs. Everything is an ambitious, richly textured journey through history – and herstory – as these two sisters navigate a changing America over the course of their lives.

RSVP with Adella at Adella.ivison@curekidscancer.com by 8/23/19
Can’t get your hands on the book? Let us know! We can help!

Congratulations to Frankie who rang the bell on July 11th!  We were so happy to have Frankie and his family stop by to celebrate his end of treatment bell ringing! We had his favorite food, some presents, and Frankie added his handprint to our Handprints of Hope Wall.

Thank you to Bay Creek Paddle for hosting our July Parents Night Out.  Everyone had a wonderful time on the water!  Contact Adella at Adella.ivison@curekidscancer.com for more information on our next Parents Night Out!

Our friend Ethan celebrated his 11th birthday in a BIG way! Instead of getting gifts, he asked for his friends & family to donate to CURE! This wasn’t just any party – we’re told it was complete with SEVERAL bounce houses, a sweet water slide AND a dunk tank! We think it’s pretty cool that he asked for donations to help our families & we appreciate his kindness.

We have the BEST friends! Family members of Trey Butler were so kind to sign up to care for our Julie Roberts Children’s Memorial Garden last week in his memory. In addition to tending to our garden, they also brought art kit donations for CURE kids! This is incredible! Thank you for your kindness and for thinking of our CURE families.

A HUGE thank you is in order for our friends at the Rotary Club of Geneseo, NY. They included CURE in their Summer Festival by generating donations from a 50/50 raffle. We are the humble recipients of $784! There’s more? Yes! There’s more! The VERY GENEROUS recipient donated her winnings to our organization, doubling the impact of the event! Thank you so much for thinking of our families and letting them know they are not alone in their battles!

A HUGE thank you to our friends at Raider Nation Rochester for hosting a raffle that raised money for CURE! They raised over $1,000 for our families!!

A big thank you for our friend Cooper! What an amazing and artistic guy! He made these beautiful pieces of artwork and then had them made into greeting cards! All proceeds were donated to our organization, in addition to proceeds from a basket auction. Thank you so much to Cooper and his family for thinking of CURE and the families we support!

Save the Date for another great day:
Our Charity Events’ Motorcycle Poker Run
$15 per motorcycle or car (plus $5 per passenger)
Take a scenic route while supporting CURE! Collect a playing card at each stop. The top three card hands WIN CASH!
Music, food and fun at the end of the ride at the Rush Creekside Inn!
Want to volunteer the day of the event? Sign up here.

Seeking partners to show us how CHEESEY you can be!
Restaurants are invited to participate in the 2nd Annual
#LiquidGoldforCURE Challenge THIS September.
Contact Holly for details: holly.dutcher@curekidscancer.com

Want to make a difference for our families?  We have some great partnership opportunities available for our 11th Annual Recipe for a CURE Sunday Brunch on Sunday, September 29th at Arbor at the Port.  

Find out more by clicking here or by emailing our Community Coordinator bridget.sadler@curekidscancer.com.

Mark your calendars! Our Peachskin Sheets Fundraiser is scheduled for November. These sheets are amazing! They are incredibly soft, and wrinkle free, making them the perfect holiday gift. And as a bonus, a portion of your total is donated back to CURE. That means for every sheet set you purchase, you are really giving two gifts!! More details will be available as we get closer to November.

Help support CURE August 1st – August 14th at A Horse With Wings (775 University Avenue)! Going to Park Ave Fest? Be sure to stop by here, too! During this two week fundraiser, 25% of your purchase will be donated to CURE Childhood Cancer Association when you mention “CURE” at checkout.  To learn more about their shop, visit their website here.

In Baby Boomer Baseball, Kravetz relives his youth, sharing fascinating tales from the golden era of baseball and observing the game’s changes through its steroid era and beyond.

Whether Kravetz is drawing on his awe for the game as a boy or on personal discussions with Gary Carter, Hank Bauer, Tommy John, Bob Mathias, Clete Boyer, Tim McCarver, and the former director of research of the National Baseball Hall of Fame, Tim Wiles, he shares stories that will rekindle your love for America’s pastime.

Our friend, author Robert Kravetz, will be donating $10 for every book purchased to CURE! Want to check out this wonderful book full of stories and stats? Contact him today: rkravetz@brightonsecurities.com or sfasciano@brightonsecurities.com

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)

  • 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

  • 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 “CURE Childhood Cancer Association” 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 need help with our Julie Roberts Children’s Memorial Garden! Sign up for a week to adopt the garden this summer and lovingly care for it in memory of the sweet children we’ve lost.
Sign up here: https://www.signupgenius.com/go/70a0e44acaa2da6fd0-garden

We need help at this year’s Park Avenue Festival August 3rd and 4th!

Sign up to represent CURE, sell our super cool mermaid headbands and sunglasses and increase awareness of our organization here.

Join Our Team!

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

If you are interested, please email 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

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

Email Brittany Charles if you are interested in learning more about CURE’s new Young Professional Group!
charlebc11@gmail.com

The Grief of Grandparents

The relationship between a grandparent and a grandchild is very special and unique. When a grandchild dies, the grief associated with the loss is often so intense and painful, it leaves bereaved grandparents feeling hopeless as they experience what many refer to as a double loss. Not only do they mourn for their grandchild, they may also feel a sense of helplessness because they are unable to take away the pain felt by the parents of their grandchild, one of whom is their own child.

Grief Is Unique
As with any type of loss, the grief of a grandparent is unique to each individual. Some grieving grandparents can easily express their pain through tears and talking about their loss. Others find it difficult to express all they are feeling and may have difficulty with tears or may not cry at all. Research has shown that the amount of tears shed and words spoken are not a correlation of how rapidly grief is processed. Some people cry on the inside and talk when others aren’t listening.

Emotional Aspects of Grief
The grief journey has many emotional peaks and valleys and lasts far longer than society in general recognizes. Grandparents may initially experience overwhelming feelings of denial, shock and numbness. In time, the shock will wear off and other emotions such as anger, guilt and regret may surface. The death of a grandchild isn’t something a grandparent ever expected to experience; they expected their grandchild to outlive them. Many grandparents say “I wish it had been me who died instead of my grandchild”. There are times when the emotional rollercoaster of grief can be very confusing as bereaved grandparents experience a variety of intense emotions which may vary from one moment to the next.

Numbness and Shock
There are many facets of grief, but no certain order in which they will be experienced. When a grandchild dies, most grandparents feel a protective numbness or shock. Even though they may know their grandchild has died, their minds may want to deny it and the numbness allows this. They may find themselves talking to and about the grandchild as if he or she were still alive. They may “see” the child somewhere, only to realize it is someone else.

Trauma
As the numbness lessens, the pain and frustration a bereaved grandparent experiences may become more intense. It has been said that grief truly begins when the shock has worn off. As grandparents begin to fully feel the extent of their pain, they may feel overwhelmed with sadness, anger, guilt, regret and questions of why. It can be helpful to seek the support of others who have experienced a similar loss who can provide a safe place to share feelings and offer encouragement.

Anger
Not everybody experiences anger as part of their grief journey, but many do. Anger may be directed inward or outward toward others. Anger may be focused at God, the spouse, the child or even the grandchild who has died. It is not uncommon for a bereaved grandparent to have anger at themselves for not being able to prevent the death which has devastated the family. While anger is often associated with being a negative aspect of grief, it can also be used constructively. Anger over injustices and diseases, for example, have led those in grief to turn their anger into action toward raising money, funding scholarships, changing laws and making the world a better place in honor of their loved ones who died.

Depression
Some depression is a normal part of the grieving process, yet it may feel so overwhelming to bereaved grandparents that they fear they are going crazy. Bereaved grandparents may also experience additional stress concerning the emotional and mental wellbeing of their own child who is grieving. If the depression does not appear to lessen over time, you may want to talk with a qualified professional who can determine how best to help you.

Grief and the Family
Because each person’s grief journey is unique, many bereaved grandparents find they are grieving much differently than their spouse and other family members. Grief can affect the family dynamic, as everyone processes their grief at different speeds and in different ways. Each grandparent had their own relationship with their grandchild and will likely have their own way of grieving as well, which may create added stress within the family relationships. There is no right or wrong way to grieve and there are no timetables. Communication, understanding and patience with one another are critical while on the grief journey.

Grief is Hard Work
Grief is hard work and it requires a lot of energy and a commitment to survival to successfully navigate this journey. This can be difficult for bereaved grandparents who may have little energy to give as they face the full magnitude of their loss. Most grief professionals recommend that bereaved individuals work on their grief at their own pace trying to achieve small goals, especially early in their grief. We live in a technological age where there are many resources for support and grief education available. Education and support are key components in learning about and processing grief. By taking small steps on a regular basis to seek support, sharing living memories and gaining insight and education into the grieving process, bereaved grandparents can begin to find hope.

Love Remains
Grief is the price we pay for love; love doesn’t die when a grandchild dies. Because love remains, the work put forth to process grief will eventually lead to a life no longer solely focused on the death but rather a life filled with good memories and shared joy about the grandchild.

This brochure sponsored by Harry and Cheryl Carney
in loving memory of their granddaughter
“Princess” Kelsee Nicole Corbitt



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, Amazon and gas cards
  • Weighted blankets
  • Essential oils
  • Mini diffusers
  • Heating pads
  • Dry shampoo
  • Paper towels and toilet paper
  • Facial Cleansing Wipes
  • Items for teens or young adults
  • Toys for kids under 3 years old
  • Playing cards and card games
  • Word searches, adult coloring books and crosswords

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

Bereavement Group:

 

The first Wednesday of each month

Hosted by Kiersten Kunick, Parent Advocate, Liz & Paul Conrow and Deb Zalar, bereaved parents

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?  CURE Childhood Cancer Association works with Boost Tutors to provide supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development. The group of teachers at Boost Tutors, 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. The 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, also. For more information please contact Adella Ivison, Program Coordinator for CURE, at 585-473-0180 or Adella.ivison@curekidscancer.com and she will make a referral.

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 Adella Ivison, CURE Program Coordinator, at 585-473-0180 or Adella.ivison@curekidscancer.com and she will make a referral. This service is provided free for CURE families.

Facebook Live:

Kiersten Kunick and Michelle Magin, 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 at kiersten.kunick@curekidscancer.com or Michelle at Michelle.Magin@curekidscancer.com

They will do their best to answer your questions and address topics you’d like to hear about!

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 and rest and repose, all completely free of charge.  At the Home, medically fragile children can experience a different kind of healing, one of the mind and the spirit.  It’s 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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