September 2019 Newsletter
What is sickle cell disease?
The above video is a very basic explanation of Sickle Cell Disease. September is Sickle Cell Awareness Month. To learn more information about the disease, please visit: https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease
Meet C.U.R.E. Kid Sidney!
Sidney was born and raised in Rochester, NY. He will be entering his junior year at School of the Arts as a Visual Arts major. In his spare time, he likes to draw, play video games, shop online and at the mall. He is also the taste-tester and critic for at-home family meals. Diagnosed with Sickle Cell Disease, Sidney thanks his parents for the love and support and CURE for the role it plays in his well-being
We are so thrilled to share that Sidney is going to be one of our C.U.R.E. Kid Chefs for this year’s Recipe for a CURE Sunday Brunch on Sunday, September 29th!
On August 5th, our friend Kylee rang the end-of-chemo bell, signifying the end of her treatments! It was so much fun having her come to the office and make a handprint for our gallery, that is after Mom did!
Our friend Vivian got to ring the end-of-chemo bell on August 6th. Afterwards, she came to the office and added her hand print to our gallery also. We also provided her favorite food: Pizza!! It was great fun!
When: Sunday, September 8th; 6 PM – 8PM
Where: Portside Shelter; Ontario Beach Park
What: In partnership with almost a dozen other childhood cancer organizations, a gathering to increase awareness of September being Childhood Cancer Awareness Month. Rochester buildings will be lit gold/yellow for the week of September 8th (but many will be lit gold all month!). We will be planning to make paper sunflowers to leave around town to raise awareness. We are partnering with half a dozen other childhood cancer support organizations from the community, as well, who will be offering activities for our attendees! At 7PM, we will light luminaries in honor of or in memory of a child who is fighting or has fought cancer.
Food Bags for C.U.R.E. Families:
We know it can hard to make ends meet when the kids go back to school. We at C.U.R.E. 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 staff@curekidscancer.com to set up a pick up time!
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/
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.
September Book Club: Summer of 69 by Elin Hilderbrand
Book Club will be held at the C.U.R.E. office on
September 25th from 6:30 – 8:00 p.m.
Welcome to the most tumultuous summer of the twentieth century! It’s 1969, and for the Levin family, the times they are a-changing. Every year the children have looked forward to spending the summer at their grandmother’s historic home in downtown Nantucket: but this year Blair, the oldest sister, is marooned in Boston, pregnant with twins and unable to travel. Middle sister Kirby, a nursing student, is caught up in the thrilling vortex of civil rights protests, a passion which takes her to Martha’s Vineyard with her best friend, Mary Jo Kopechne. Only son Tiger is an infantry soldier, recently deployed to Vietnam. Thirteen-year-old Jessie suddenly feels like an only child, marooned in the house with her out-of-touch grandmother who is hiding some secrets of her own. As the summer heats up, Teddy Kennedy sinks a car in Chappaquiddick, a man flies to the moon, and Jessie experiences some sinking and flying herself, as she grows into her own body and mind.
Can’t get your hands on the book, but want to participate? Let us know!
Adella.Ivison@curekidscancer.com
If you remember ever saying, “I’d like to give back.” and wasn’t exactly sure how, we have your perfect opportunity:
On Wednesday, September 11th
starting at 4:00 p.m.
We will have a Parents’ Night Out cooking for some families that could use some home-cooked goodness!.
If you are interested, please RSVP with Adella at Adella.ivison@curekidscancer.com or call 585-473-0180.
Thank you to all of our Board Members, Employees and Volunteers that came out to Park Ave Fest this year, to help increase awareness of Childhood Cancer & Blood Disorders.
A special thank you goes out to all of our friends who stopped by our booth to visit and share their stories also!
Aurora and her family had a wonderful time with the Firehouse Experience that was so generously donated back to CURE for a lucky CURE family to participate in.
Thank you to Brian for the donation, Dan for coordinating this experience and the Henrietta Fire Department for making this day so amazing for one of our wonderful families!
U of R’s Wilson Day volunteers really worked hard to get us ready for September which is Childhood Cancer Awareness Month! Thank you girls for all your help!
Thank you to our friend Kaleigh who stopped by our office last month to drop off bags of art supplies for our C.U.R.E. kids! Thank you Kaleigh for thinking of our families! Kaleigh has been a friend of C.U.R.E. for several years and we are so appreciative of her continued kindness. She purchased these items with her own money!
The 4th Annual Patrick Carr Golf Tournament was a huge success again this year. Not only was it another sell out fundraiser, we also raised over $30,000! Thank you to everyone that come out to have fun, remember a wonderful little boy and honor those who have battled or are currently battling pediatric cancer.
Thank you to the students from Brockport Day of Service for volunteering at our office. It was a delight to have you here!
The wonderfully creative people at the Lions Club of Dansville, made these really cool germ masks for our kids at the hospital. It is everyone’s goal to keep our little fighters as healthy as possible and with these masks, it helps greatly! Thank you Lions Club of Dansville!
The Attica Rodeo and Hearts for Hailey raised over $500 for C.U.R.E. Childhood Cancer Association.
Thank you Hailey and her Rodeo Fans!!
For those of you unfamiliar, Hailey has been collecting aluminum can tabs for several years. She and her family then bring the tabs to a local scrapyard that gives the family a check for their tabs. Hailey and her family then kindly donate the proceeds to our organization. To “Keep Tabs on Cancer With Hailey”, just drop off your can tabs to our office (bonus points if they are sorted by color!!)
Thank you to all our volunteers, and our amazing friends at the Rush Creekside Inn for helping to make this year’s Annual Motorcycle Poker Run a huge success! Because of YOU, we were able to raise over $5,000!! Also, a big thank you to Par-keys Lounge, Jose & Willy’s at the Lake, and Uncle Dave’s Upper Deck for participating as our stops along the route. Thank you to Flint Creek for coming out and sharing their amazing music with us, and lastly, Dewey Ave Smoke Shop and Sal’s Birdland for their donations!
Our 2nd Annual #LiquidGoldforCURE Challenge is underway!
Our kind participants this year are:
The Gate House – Wood Fired Goat Cheese Mac & Cheese
Create A Pizza – Broccoli Mac & Cheese pizza (customizable! You can add more toppings!)
MicGinny’s on the River – French Onion Mac & Cheese AND BBQ Chicken Mac & Cheese with Goldfish Cracker Crust
Buntsy’s Neighborhood Food & Drink – Buffalo Chicken Mac & Cheese in a Waffle Cone
585 Rockin’ Burger Bar – Loaded Kids’ Mac & Cheese
Nashville’s –
Sweet Pea Plant Based Kitchen – Spicy Queso Mac & Cheese
Pub 235 – Bacon and Asiago Mac & Cheese
Check out these delicious dishes! Every time one is ordered, our friends will donate $1 to C.U.R.E.! The restaurant with the most purchases will get a VIP table to our Recipe for a CURE Sunday Brunch on September 29th!
Join us this September in support of Childhood Cancer Awareness Month, by rocking your Gold Mermaid Tail Headband! With every purchase of a headband, one is donated to a CURE Child. You can even leave a note of encouragement for them! To purchase a headband, click here.
Headbands can be mailed to the purchasor!
September is Childhood Cancer Awareness Month and Sickle Cell Awareness Month. Show your entire neighborhood that you support these families and friends by purchasing one of our AMAZING lawn sign today.
Check out our new design!
Quantities are limited so click here to order yours!
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.
November 28, 2019Thursday 9:00 AM – 12:00 PM
990 Manitou Road
Hilton, New York 14468
Join us Thanksgiving morning for a fun filled road race! The race is held on Thanksgiving morning at 9:00 AM. Proceeds from the race are generously donated to CURE Childhood Cancer Association. You can register at www.rwg10k.com
Not a runner? That’s ok!
We need volunteers, too! Check out the website above for volunteer opportunities!
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
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!
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 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 Recipe for a CURE Sunday Brunch September 29th.
Sign up with us today with Bridget at bridget.sadler@curekidscancer.com.
We are currently looking for interns for 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 staff@curekidscancer.com
Email Brittany Charles in you are interested in learning more about CURE’s new Young Professional Group!
charlebc11@gmail.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
Gift cards for McDonalds, Wendy’s, Taco Bell, Burger King and Arby’s
Weighted blankets
Essential oils
Mini diffusers
Heating pads
Dry shampoo
Paper towels and toilet paper
Facial Cleansing Wipes
Cases of water
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
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 to provides 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 585-317-7269 or Adella.ivison@curekidscancer.com and she will make a referral.
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!
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.
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.