CURE Childhood Cancer Association

September Newsletter

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/cureawareness
(13) Help us with the Inaugural “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 10th Annual Recipe for a CURE Sunday brunch on October 14th!

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!

Spotlight On Nora

Meet Nora! Nora is such a strong little fighter with a huge heart. Nora and her mom, Ashley, recently came into the CURE office and sat down and shared Nora’s story with us.

Here is Nora’s journey as told by her mom after she was informed at 7 months pregnant that her unborn daughter had a large mass in her abdomen:

“On my birthday, 2 hours from home I delivered a strong, fearless little warrior. Nora was born via c-section and went directly to the NICU. She was hooked up to IV nutrition until she had ultrasounds and some other testing done. Within a couple days she was with me out of the NICU. Those tests had shown the mass was on her adrenal gland and her urine tests required further testing. We met with the pediatric oncology team and scheduled her first MIBG scan and scheduled surgery to remove the tumor and biopsy it. Nora had surgery at 2 months old and was officially diagnosed with stage 4s neuroblastoma shortly after. Our lives changed forever in that moment. We would do monthly ultrasounds, labs and random MRIs to monitor and make sure that was the case. They were right – it had spread to her liver and bone marrow, the liver spots went away and the cells in her bone marrow were slowly going away. When Nora was 18 months old just playing like any other day with her brother, not acting any different I noticed the right side of her face started to drop. By the evening, her right side had paralysis and wouldn’t move. After going to our ER at home, we were transferred to where our oncology team was and later told Nora had relapsed. She was then re diagnosed with stage 4 high risk neuroblastoma and started treatment within a couple weeks. So far, her treatment has consisted of 6 rounds of chemo, 2 stem cell transplants, 18 days of radiation, and is currently in the middle of immunotherapy. We are hoping after immunotherapy, her scans say she has no evidence of disease 

Nora has been through so so much in her 2.5 years, more than you could ever imagine and continues to fight. All of this has been a normal for her, all the tests and scans she’s been doing since she was born, she’s never had a break from it for more than a couple months. She’s my little warrior  thank you all for supporting us in this journey and giving us your love and prayers. Thanks for helping us raise awareness and spread word that it isn’t rare and happens everyday. It has and will always mean the world to us.”

Free CURE Programming and Events

Please RSVP to Andrea ASAP!
Andrea.Shaffer@Curekidscancer.com

We are inviting anyone who would like to recognize that September is Childhood Cancer Awareness Month to join us at Harborview Shelter on Sunday, September 16th.

We will be painting rocks with messages for childhood cancer to raise awareness and put into public places around town.

We will have a giant message board to sign to share words of encouragement, memorialize a childhood cancer fighter or honor a childhood cancer fighter.

At 7PM, we will be lighting luminaries in honor or memory of childhood cancer fighters.

This is not a fundraising event. This is an event where local childhood cancer organizations are invited to come together to show our support for our families – let them know we are all in this together.

Thank you for your support!

A big thank you to our friends at the Park Ave Summer Art Fest for allowing us to have space at the event. We kept guests cool by handing out free paper fans with our CURE logo and website on them! 500 fans were distributed!

Our friends at the Rochester Knighthawks were so kind to suggest Brady’s Bunch Lacrosse support our organization as part of their weekend tournament in Rochester in August. The group, in conjunction with the Junior Knighthawks, collected over $1,600 worth of gift cards for our families! That is going to make a HUGE difference! Thank you!

A HUGE thank you to our friends at Mint Salon! Earlier this year, they held Braid Bars at local establishments. The staff donated their time, braiding anyone who came to their booth for a $10 donation. Their kindness and talent raised $1,000 for CURE! Thank you so much, ladies! You’ve made a difference and we are humbled by your support!

Thank you to our friends at the Rush Creekside Inn for allowing us to host the annual Our Charity Events Motorcycle Poker Run there on August 26th. We raised nearly $5,000 for CURE! A special thank you to the Rush Creekside Inn for holding a 50/50 at every week’s Wednesday “Bike Night” and donating over $500 to us! We couldn’t host this event without our sponsors, participants, volunteers…our friends. Thank you for taking the time for our families and making a difference!

We would like to thank our friends at the Rush Lions Club. Again, they have supported our organization and presented a check at the annual Our Charity Events Motorcycle Poker Run. The group holds a chicken BBQ on Palm Sunday annually and donates the money to CURE. We will mark our calendars to come over next year because it must be delicious! This year, $300 was generated for our organization! Thank you!!

Upcoming Fundraisers

You’ve seen us posting about #LiquidGoldForCURE , but what is it?
Participating local restaurants are making a custom mac & cheese (or hot dog with cheese  ) dish. Every time that dish is ordered in September, $1 will be donated to CURE. The winning restaurant will be awarded with a VIP table to the Recipe for a CURE Sunday Brunch and get a cool trophy.

Why did we select mac and cheese for the #LiquidGoldForCURE challenge?
Let’s face it: kids LOVE mac & cheese. Let’s honor their fight by eating a kid-friendly (and adult-friendly, too!) dish and raising money to help their families!

Who is participating?
We are SO EXCITED to have so many friends participating this month!
(in no particular order)
585 Rockin Burger Bar (Cheesey Ball Homestyle Mac and Cheese)
Steadfast (Philly Cheese Steak Mac n Cheese)
Full Belly Deli (Mac and Cheese with Hot Dogs)
Shamrock Jacks (Cheeseburger Mac and Cheese)
Clutch Kitchen and Bar (Mac and Cheese over Tater Tots covered in Smoked BBQ Pulled Pork and Fried Onion Straws)
The Point (in Olean, NY – Grilled Chicken Italian Mac and Cheese – ALSO “Point It” during the month of September and add extra cheese to your dish for just $1.99. $1 of that will be donated to CURE!)
Dogtown (The Working Dog)
ROCBurger on Main ($1 from every cheeseburger ordered in September will be donated to CURE!)


Please join us for a WILD time at the 10th Annual Recipe for a CURE Sunday Brunch! We are so excited to offer at least 14 stations of food prepared by the most talented Chefs in Rochester. Be sure to get your tickets before we sell out!
Partnership opportunities and tickets can be found here.

We need your help to make the 10th Annual Recipe for a CURE successful!

Gather your friends, your neighbors, your family, your co-workers…We have a CHALLENGE for you!
Think you have what it takes to put together the BEST baskets for a silent auction? Let’s see!
Put together a themed basket for us to auction off at our event and make a difference to local families facing BIG battles!
Some theme ideas:
– Movie Night
– Date Night
– Moscow Mule
– Margarita
– Italian Night
– Mexican Night
– Girls Day In
– Sports
– Princess
– Legos
– Family Breakfast
– Pet Care
– Handyman
– Car enthusiast
– Baking
– Fishing
– Coffee Lovers

*PHEW* We’re pooped. What other ideas do you have?! We can’t wait to see!
Baskets can be delivered to the CURE office Monday through Friday 9 AM – 5 PM through September 28th.
Need us to pick it up? Give us a call! (585-473-0180)
Thanks for helping us make this the BEST event yet!

Great news! We will again be partnering with Peachskin Sheets to offer a way for you to have the most comfortable sheets ever AND help CURE at the same time! Our fundraiser will run from October 14th through October 27th. Each incredibly comfortable sheet set is only $55 and $20 from each set purchased through our fundraiser is donated to CURE! Unsure about how awesome these sheets really are? Just ask anyone who bought them with us last year! (We know Holly’s whole family will be getting their second set for Christmas this year 🙂 ).

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!

BIG NEWS!! Six Delta Sonic locations have been added to the list of participating car washes!! If you get your car washed at the Classy Chassy, Laser Wash or Delta Sonic, prepurchase your car washes here and help support local families all at the same time!

Click here to purchase!

September is here! Help Simply Glamorous Salon and Spa celebrate their 3rd anniversary by giving back. CURE Childhood Cancer Association is a local non profit helping children right here in our own city and Children With Hair Loss supplies free wigs to childhood cancer patients. From September 23rd-29th they will hold Cutting 4 a CURE Week!! Book an appointment during this week along with a cash or ponytail donation and receive a discount on your services! Also enjoy discounts on all products in salon and online as well as great raffles and prizes! Be on the lookout for information to come very soon. Follow them on Facebook!

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 and Spring ’19!!

If you are interested, please email: 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
  • Essential oils
  • Oil diffusers
  • Weighted blankets

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


Bereaved Families Corner

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

The next meeting is September 5, 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.