June 2022 Newsletter
C.U.R.E. is here.
From the day of diagnosis, throughout treatment and beyond:
The support doesn’t stop when the treatment stops.
And we are so thankful for our friends who make our support possible.
Spotlight on: Mia
Meet our friend, Mia.
Mia was diagnosed with an undifferentiated Embryonal Sarcoma of the liver in January 2022.
Mia loves all colors, but her favorite color is PURPLE!
Her birthday is in November and she is five years old.
Mia loves donuts, ballet and gymnastics!
In the hospital, Mia likes music therapy, chapel, eating pizza, the playroom, drawing, coloring and watching her favorite movie, Coco!
Mia has one older sibling named Cameron who is 11 years old. She has two dogs named Zander and Lady. Mia’s parents are both Veterans USMC. She also likes to visit her family in Oklahoma.
Welcome, Carol!
We are thrilled to introduce our Program Coordinator, Carol Austin, to our C.U.R.E. Family.
Carol joins us after living and working in Key Largo for many years, moving back to Rochester last summer. She worked with C.U.R.E. many years ago on the annual report and various writing assignments.
She’s looking forward to planning some exciting programming for our Families in the near future!
Thank you, Jackie
A heartfelt thank you to our Board Member, Jackie. She has dedicated SIX years to the Board of Directors here at C.U.R.E. and has made a tremendous difference during her tenure. This month, she fulfills the entire two terms she volunteered to complete. From planning Trivia Night to volunteering at events, Jackie has been a warm and welcoming presence that we are certainly going to miss on the Board. Thank you, Jackie, for your tireless dedication to C.U.R.E. Families.
Attention C.U.R.E. Families:
There is some exciting news coming from the Pediatric Hematology/Oncology Department at Golisano Children's Hospital: a second Social Worker has been hired to work alongside Jade Giesy! She will be shadowing Jade for a few weeks until everyone is comfortable and then she will be on her own! Catherine McAvoy-Pindar is relocating from the Albany area. Catherine's responsibility will be caring for patients and their families in AC6 in the outpatient area. Jade's responsibility will be 7 North and any of our kids in the PICU or WCC6. Please give Catherine a warm welcome when you meet her in the outpatient setting.
ATTENTION C.U.R.E. FAMILIES:
Please consider taking this survey that should only take 5 minutes. We are trying to create and evaluate programming at C.U.R.E. and want to ensure we are offering the most effective and needed programming to our Families. If you complete the survey and include your name and contact information at the end, you will be entered to win a $50 gift card!
** THIS SURVEY IS OPEN TO C.U.R.E. FAMILIES ONLY. **
Sickle Cell Advocates of Rochester is hosting their first educational conference at the Rochester City School District 131 West Broad Street from 9 AM - 1 PM Saturday, June 18th.
Meeting ID: 892 4077 3028
Passcode: 603984
Attendees will hear from a variety of speakers both in person and the comfort of zoom on topics relating to Sickle Cell Disease, Medication Management, Pediatrics to Adult Care Transition, Advocacy, Clinical Trials, Medication Management, Emergency Room Treatment and Legislative agenda.
Panelists include:
Dr. Suzie Noronha – University of Rochester – Sickle Cell 101
Dr. Francis Coyne – University of Rochester – Pediatric to Adult Transition
Dr. Mark Goodwin - Sickle Cell Thelessemia Patient Network – Advocacy
KeyNote Speaker: LaTasha H. Lee, PhD, MPH - Vertex Pharmaceutical - New and Innovating SCD Clinical Trials
Dr. Brian Berman - Emmaus - Endari® (L-glutamine oral powder) for Sickle Cell Disease
Speaker TBD - GBT – Patient Programing Sickle Cell
Gregory Brannon - Patient Video
Kim Jones – SCTPN - Emergency Room Patient Experience
Director Ginger Davis - SCTPN Sickle Cell Thalassemia Patient Network - Emergency Room Advocacy
Desomd Meeks – Assemblyman – Legislative Agenda
Jazz Jubilee featuring band “as One”
6 pm - 11 pm
75 stutson street (off lake avenue)
$20 suggested donation (for sickle cell scholarship fund)
World Sickle Cell Day
June 19th is World Sickle Cell Day!
The Rundel Memorial Library will be going red to celebrate and raise awareness.
Roc-City Sicklers and Sickle Cell Advocates of Rochester will be meeting at 7:30 PM at the small park opposite the library towards Exchange Street. The park is on the same street as Dinosaur BBQ before the Rochester Riverside Convention CenterEveryone who attends is encouraged to wear red and share their stories of living with and succeeding in spite of Sickle Cell Disease
Catching Dreams
Catching Dreams Charters, Inc. hosts private fishing charters near Buffalo on Lake Erie or the Niagara River for pediatric oncology or hematology children.
We have connected with Ned, the Founder of this organization, and would love to connect our C.U.R.E. Kids to Ned and schedule some fishing charters! Charters are scheduled for during the week from mid-May through Labor Day and leave from the Buffalo Harbor or near the Niagara River.
Please reach out to Laurie Streb if you are interested in a private fishing charter.
Don’t miss the latest episode of Bringing Sickle Cell Disease to Life podcast and learn how hydroxyurea has transformed the lives of children living with sickle cell disease.
Host Dr. Wally R. Smith, MD, Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University, interviews Drs. James Eckman and Russell Ware on the importance of newborn screening and managing the transition from pediatric to adulthood care
Donate Blood or Platelets!
Many of our children depend on blood transfusions and blood products in the course of their treatment. Our children are in need of blood products and you can help! Please consider donating blood if you are well enough to.
YOU can help C.U.R.E. for FREE
1) Follow us on social media:
Facebook: facebook.com/curekidscancerrochester
Instagram: @curekidscancer
Twitter: @curekidscancer_
(2) Write a review about C.U.R.E. on our Facebook Page or on Google.
(3) Write a blog that can be shared on our website.
(4) Contact our Parent Advocate Michelle about doing a Facebook Live or Instagram Takeover.
(5) “Like”, Share or Comment on our social media posts.
Conquer Cancer in Kids:
make childhood cancer research a priority:
UPDATE: THE PETITION IS JUST SHY OF BEING ONE OF THE MOST SIGNED PETITIONS ON CHANGE.ORG. THE GOAL IS 15,000 SIGNATURES AND AS OF 2/24/2022, THERE ARE 14,658 SIGNATURES!
We invite our families and supporters to join CNN’s Rene Marsh as she advocates to make childhood cancer research a priority! Sadly, Rene lost her two year old son, Blake, to brain cancer in April 2021. She is now working with CNN and childhood cancer awareness advocates to make a difference!
To review and sign the petition, click the button below.
More petitions to sign to show your support for increasing research efforts towards childhood cancer:
GRYT Health connects patients and caregivers to others with shared experience and to information relevant to their journey.
Through the GRYT app, we’ve created a platform for people affected by cancer to connect to others with similar experiences, and to tailored information that helps our users become more aware of options specific to their needs or diagnosis – empowering them to make choices that are right for them.
Our community of patients, survivors, medical professionals, researchers and advocates across all 50 states in the U.S. and in more than 100 countries worldwide have participated in almost 1,000,000 interactions to date, inspiring people to live according to their own standards.
Trust from our community is paramount to our success and something we take very seriously. We never share any of our users’ information without their explicit permission. Unlike other apps, GRYT is the first social community that is funded, built, and run by patients and caregivers where users communicate anonymously in real-time and each person is 100% in charge of what happens with their data.
Some photos from our 13th Annual 5k and Fun Walk Presented by Cornerstone Wealth Management…
A special thank you to lynne and randy stiefler for photographing the event!
We continue to have hearts full of gratitude for everyone who participated in some way in our 13th Annual 5k and Fun Walk presented by Cornerstone Wealth Management. This event was so much fun and raised a record-breaking amount of money for this event. We can’t wait to initiate new programs and services to our families in the near future thanks to this show of support!
COINS FOR A CURE
Bloomfield Elementary is filled with absolutely thoughtful Kiddos! The 5th Grade Service Club organized “Coins for a Cure” in honor of fellow student, Laynie Cary. Coins for a Cure ran for two weeks during the month of March and a total of over $2,000 was collected! How wonderful are these students?! Thank you for honoring Laynie and letting us be a part of this incredible act of kindness. We are truly moved by your generosity.
Chris Konya is kind!
We are honored to have the support of 92.5 WBEE Radio Celebrity, Chris Konya. He has been so thoughtful in his support of our organization, in memory of sweet Landon Coia. When asked to Emcee the Chili Fire Department’s Annual Banquet, he requested a donation be made to C.U.R.E. in lieu of payment. As a new homeowner who is saving up for his wedding, we are truly humbled that you thought of us vs. getting paid directly. Thank you.
Does this mean you’re open to Emcee future events for C.U.R.E., Chris?!
We think you’re great, Sam!
Our Friend, Sam Manuele, has been working hard this Spring! He, single-handedly, removed extremely large bushes from the front of our building, removing the stump and all! He then put together this lattice, which will be adorned by climbing flowers soon. Adding lighting to our Julie Roberts Children’s Memorial Garden, he is making sure everything is in beautiful condition for the season. And last, but certainly not least, he built us this beautiful bird house, which is situated in our garden to welcome our flying friends. Thank you, Sam!
Attica Rodeo & Hearts for Hailey - You Rock!
Thank you so much to our Friends at the Attica Rodeo and Hearts for Hailey for this beautiful donation. Hearts for Hailey has been collecting donations for C.U.R.E.’s free parking voucher program for several years. YOU are making a tremendous impact in the lives of C.U.R.E. Families and we are truly humbled by your kindness.
Thank you, Captain Ned!
We are grateful for our friend, Captain Ned, with Catching Dreams for hosting our first C.U.R.E. Kiddo on a fishing charter!
Thank you, Don & Friends!
We are grateful for our Friend, Don Miller, and his wonderful friends who came to our office and made our Julie Roberts Children’s Memorial Garden look great for the season. They wanted to be sure to have it looking beautiful for our Brick Laying Ceremony. Boy, did they do a great job! They purchased and planted flowers, weeded and put out mulch! Thank you for honoring our Little Angels.
Thank you,
RDI DIAMONDS
Our Friends at RDI Diamonds are just incredible. We are so grateful for their latest donation and are so excited they will be joining us at our Survivors' Day Picnic! Thank you for keeping our Families close to your hearts.
Thank you, MCSO Officers & Friends!
We are so grateful for our Friends in the Community who work to raise awareness of #ChildhoodCancer and C.U.R.E.. Our Friend, Undersheriff Korey Brown, comes up with the most creative ways to do just that!
"Many of these children (battling childhood cancer) are given such heavy chemo treatments that they are also unable to eat. We want to take two days and remember all those in the fight."- from Undersheriff Brown's Facebook Page
On April 11th and April 12th, Undersheriff Brown, Sheriff Baxter, Board Member Sean Fico, Chief Alan Laird, Chief Michael Fowler, Sergeant Michael Zaimara, Kara Giielenfeldt, Patricio Rojas and Legislator Maria Vecchio all fasted to raise awareness and funds for children battling cancer. A total of over $1,300 was raised!
WOW! WOW! WOW!
Our Friends at The Tap It Bar & Grill and 92.5 WBEE are amazing! A HUGE Thank You to our Guest Bartenders Dan, Chris, Kimmie & TJ who hustled behind the bar to generate donations for C.U.R.E. We appreciate the hospitality of The Tap It Bar & Grill (in addition to their delicious food) and the kindness of 92.5 WBEE. The participation from the patrons is overwhelming.
Thank you! Thank you! Thank you!
Arkport National Honor Society
is phenomenal! They coordinated a Beef Stick fundraiser and generated over $1,000 to be donated to C.U.R.E. It was so great to meet the students and talk with them alongside the Buckley Family about the important of our organization and the services we provide. We are touched that the Arkport National Honor Society thought of our organization and our families through their fundraiser!
Please consider honoring our Little Angels through tending to our Julie Roberts Children’s Memorial Garden. Named in memory of Julie Roberts, our garden memorializes our Friends we have lost too soon. A brick walkway in front of our building is adorned with the names of our angels.
Tending to the garden includes weeding, pruning and watering. Sign up for a week below. You can come any day or time during that week.
September is Awareness Month
We are hoping to make Awareness Month even BIGGER this year and could use some help! With fun things like
- Flocking Yards with Golden Flamingos
- Liquid Gold Mac & Cheese Challenge
- Proclamations from local towns and the City
- Partners donating a portion of proceeds to C.U.R.E.
- (Insert YOUR creative idea here!)
We have a LOT going on.
Want to help?
Email Holly!
Recipe for a C.U.R.E. Sunday Brunch
We are looking for volunteer committee members to transport us to WONDERLAND! Want to be a part of making our Brunch special? We are in need of:
- Live Auction Volunteers
- Silent Auction Volunteers
- Decorating Volunteers
- Promotion Volunteers
Any of that sound good to you? Great! Email Holly!
Join our Board of Directors!
We have some Board positions opening in the very near future! Interested in applying?
The Board meets monthly for 1.5 - 2 hours (Currently the third Wednesday evening of the month)
Board members must attend two of the three main fundraisers (5k & Fun Walk, Golf Tournament, Brunch)
Board members are on at least one sub-committee
Board members make a monetary donation for the Board sponsored Live Auction package for the Brunch
Applications can be emailed to:
cureboardapplications@gmail.com
Join C.U.R.E.’s YPC!
We are re-energizing our YPC (Young Professional Committee)! If you are a Young Professional looking for an opportunity to get involved with C.U.R.E., meet some awesome volunteers and help our families, we would LOVE to have you!
Please reach out to Board Member, Brian Wainwright, to start connecting!
Click me to email!
We want to connect!
If you served on the Board of Directors for C.U.R.E. Childhood Cancer Association, we would love to stay connected! Please email Holly Dutcher to connect!
holly.dutcher@curekidscancer.com
Registration is Open!
Registration opens May 1st for our 7th Annual Patrick Carr Memorial Golf Tournament presented by ASP Industries and Brighton Securities.
Deerfield Country Club
$150 per Golfer | $600 per Foursome
Includes:
- 18 holes of golf with cart
- Games on the course
- Drinks on the course
- Lunch on the course
- Banquet dinner after golf
Every Penny Matters.
Do you want to join forces with C.U.R.E. and participate in our Annual Penny Drive? We make it easy! We can decorate and deliver jugs for your to facilitate your collections. We will also pick up your donations. No change rolling or counting required! Contact our office if your school or business would like to participate!
It makes cents.
C.U.R.E. Partners:
New Partner Alert:
CR Bottle Return is our newest partner! Bring your bottles to CR Bottle Return at 2750 Dewey Ave and tell them it’s for account 4052100 (C.U.R.E.) and your deposit will be donated to us! We will be given six cents for every bottle donated!
We are so thankful for this partnership! Check them out!
Glimpse of Gold's purpose is to encourage people to take the next step, even if childhood cancer is not directly affecting you or your family. Glimpse of Gold hopes to educate others on different ways to help, while encouraging people to think about the topic a little longer than they normally would.
Glimpse of Gold is so excited to be collaborating with C.U.R.E for the next few months! This collaboration involves providing monetary donations directly to C.U.R.E. At the minimum of a $20 donation to C.U.R.E., an embroidered beanie with the slogan “Only Sunshine Ahead” will be given to a child currently going through treatment at Golisano Children's Hospital (For example, if you donate $40 two beanies will be sent to two different children in bright and beautiful packaging to bring some light to their dark times). In return, the first 100 people that donate will receive a silicone wristband with the same slogan as the children’s beanies, stickers, and a thank you note! Please note that all shipping will be coming directly from Sydney Lewandowski and not C.U.R.E.
If you have any questions please contact Sydney Lewandowski. You can reach her on both Instagram and Facebook @glimpseofgold.roc or email her at glimpseofgold.roc@gmail.com
You can now return your cans and bottles to Alpco Recycling and Bottle & Can Retrieval Centers! Let them know you’d like to support “C.U.R.E. Childhood Cancer Association” and a donation will be made to us!
Alpco Recycling is located at:
846 Macedon Center Road, Macedon, NY 14502
Bottle & Can Retrieval Centers located at:
509 Spencerport Rd, Rochester
2199 East Henrietta Rd, Rochester
2374 Chili Ave, Rochester
More ways to help:
Become a C.U.R.E. Ambassador!
The Support Doesn’t Stop When Treatment Stops…
Because of YOU and your kindness.
Support our mission year-round by becoming a C.U.R.E. Ambassador! A C.U.R.E. Ambassador is a donor who commits to our mission through a monthly donation of his/her choosing. Whatever level you are comfortable with makes a difference!
Click here to learn more.
C.U.R.E. has joined the PayPal Giving Fund. Please consider adding us to your account to Shop, Donate and Raise Awareness for our families.
PayPal Giving Fund expands our fundraising reach through direct integration with PayPal, eBay and GoFundMe.
Want to help make a difference while you shop in the Amazon app, at no extra cost to you?
Simply follow the instructions below to select "C.U.R.E. Childhood Cancer Association" as your charity and activate AmazonSmile in the app. They'll donate a portion of your eligible mobile app purchases to us.
How it works:
1. Open the Amazon app on your phone
2. Select the main menu (=) & tap on "AmazonSmile" within Programs & Features
3. Select "C.U.R.E. Childhood Cancer Association" as your charity
4. Follow the on-screen instructions to activate AmazonSmile in the mobile app
Bereavement Group
Bereavement Group occurs on the first Wednesday of every month.
We will be hosting the Bereavement Meeting at the C.U.R.E. office at 7 PM. Please bring a lawn chair so we can enjoy the weather outside!
For more information, please reach out to Michelle Magin.
michelle.magin@curekidscancer.com
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 C.U.R.E.’s wish list so that we can continue to provide for our families:
A cure for childhood cancer, blood diseases and brain tumors!
- Buffalo Bills items (hats, gloves, socks, etc.) for teen gifts
- Colored pencils/art pencils
- Universal phone chargers with long cords
- Reliable thermometers
- Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
- Gift cards for GrubHub, McDonalds, Wendy’s, Burger King, Moe’s, Chipotle, Dunkin Donuts and Starbucks
- Crafts for young adults and children
- Items for teens or young adults
- Toys (Please look at our Amazon Wish Lists:
Under $20: https://a.co/hlW4hCO
$20 - 50: https://a.co/eHiQcV2
$50+: https://a.co/bVDujCy)
We ask that all items be new and recently purchased. Thank you!
Get your C.U.R.E. Gear
Rock C.U.R.E. Elite Sport Socks!
These super comfortable and supportive sport socks are HERE! What a great way to show support for C.U.R.E. and small businesses, they are made in the USA! Rock them while you are working from home or out exercising. Sandal season is over, rock these cozy socks today!