April 2023 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.
Your Kindness Makes a Difference…
In the first quarter of 2023, we had many new Kiddos added to our C.U.R.E. Family. The kindness you show our organization allows us to help our Families every day. In addition to the support listed to the right, C.U.R.E.:
- Celebrated 5 End of Chemo Bell Ringings
- Distributed nearly 70 tickets to the Rochester Museum & Science Center
- Enjoyed 3 Parents’ Night Out Activities
- Entertained 150 C.U.R.E. Family members with a Knighthawks Game dedicated to C.U.R.E. Kids
- Provided toys and crafts to 5 Kiddos
- Helped alleviate pain of two kiddos with heating pads…
… and we couldn’t do it without YOU! Thank YOU!
Welcome, Nicole
C.U.R.E. is pleased to welcome our new Community & Events Coordinator: Nicole Maitland. Nicole joins our organization with 15 years of event coordination experience. She’s worked at Metro Justice, The American Red Cross and Giglink. We are excited to see all she can do with our events! Be sure to say hello if you see her around!
Spotlight on: Leah
Meet our friend, Leah.
In July 2022 at the age of 16, Leah had relapsed with Acute Myeloid Leukemia (A.M.L.). This was found during her routine bloodwork. She was admitted the following day. We spoke with Dr. Andolina at the clinic before going up to 7N and went over the plan. The plan he had was to do two rounds of chemo and then a bone marrow transplant. Each round of chemo being a 30 day inpatient stay, then a week or so at home and then back for the second round. They started the search for her donor right away. Her sister Anna was tested, but was only a half match so they continued to search and found three perfect match donors! The team started the scheduling for Leah’s bone marrow transplant and we were given a date of October 4th for Leah to get her second chance at life. Leah’s donor cells came from Germany and were flown overnight so she could receive them fresh. She spent another 30 days inpatient for the transplant on WCC6. Leah did well through all of this! She has gone through so much in her lifetime. She was born with craniosynostosis and had major reconstructive cranial surgery at 10 months old, was diagnosed with Crohn’s Disease in 2018, and was diagnosed with A.M.L. in 2020. She underwent four hard cycles of chemo and was cancer free and feeling great for 2 ½ years before her relapse. This was her hardest fight and she WON! Leah is currently >99% donor cells and is CANCER FREE!
Hey, C.U.R.E. Parents:
Did you know we have a private Facebook Group JUST for you? Connect with other parents. Ask questions about treatment, education help and more. Learn from others.
Contact us to learn more!
March Parents’ Night Out
Two great teams faced off for the Showdown at Parents’ Night Out at the Omega Escape Room on Friday, March 24th! We had a LOT of fun and Parents connected with one another (while trying to outsmart the other team ;) )
C.U.R.E. Parents look for sign up information in the Program emails or the Facebook Parent Group to join us at our next Parents’ Night Out!
April Parents’ Night Out
Announcing an Exciting New Partnership with Camp Good Days: Childcare Opportunities on Parents’ Night Out!
C.U.R.E. Childhood Cancer Association and Camp Good Days are partnering together to provide child care during our Parents’ Night Out. In April, Camp Good Days is offering an evening pool party! C.U.R.E. Parents will be able to attend the Parents’ Night Out while the kids enjoy a fun evening of swimming, waterslides and a splash pad at the Perinton Community Center! Spots are limited. For this event, children must be five and older. C.U.R.E. Children four and younger may attend, but must be accompanied by an adult. Camp Good Days is requesting an RSVP by 4/3/2023. Reply to Erin at: efleischer@campgooddays.org
New Program Alert: Grandparents Connect!
Grandparents can be an essential part of the care team for C.U.R.E. Kids. You need support, too! Come on out and meet other C.U.R.E. Grandparents! Our hope is to offer these opportunities once per month to help establish connections.
Contact Carol to R.S.V.P. - your mid-morning beverage is our treat!
SAVE THE DATE!!
C.U.R.E. Childhood Cancer Association’s Survivor’s Day Picnic will be held on Saturday, June 3, 2023 this year.
Mark your calendar!
NEW SCHOLARSHIP OPPORTUNITY
Jeffrey Charles Sewell Scholarship:
We are excited to announce the inaugural Jeffrey Charles Sewell Scholarship for young people who were supported by C.U.R.E. and who are currently attending, or plan to attend, college or trade school. The Jeffrey Charles Sewell Scholarship was established by a founding C.U.R.E. Family in honor of their late son.
The JCS Scholarship winner will receive a one-time, $2,000 award to be applied towards their continuing education. Eligibility for this scholarship:
Cancer survivors who have been supported by C.U.R.E.; and
Have been accepted, are currently enrolled, or are a prospective student with plans to enroll into a 2-year, 4-year, or trade school.
If enrolled, must be in good standing with their college or institution.
The deadline for applications is Friday, March 31, 2023.
The winner will be selected on Monday, May 1, 2023 by a committee of Sewell Family members and C.U.R.E. board members.
Any questions about the application process can be directed to the Sewell Family (jcsscholarship203@gmail.com).
With this opportunity we are pleased to continue to embrace families at every turn!
Resources:
Childhood Cancer Survivor Scholarship and Employment Resources:
Children's Cancer Cause is assisting childhood cancer patients, survivors and families by centralizing most national resources that provide scholarships for survivors of childhood cancer or those with particular effects. The site also has resources and advice relating to employment and applying for these scholarships.
Some opportunities require commitment to a childhood cancer advocacy project while in college, while others make you eligible for you just being you. But you do need to apply! Be sure to read the instructions and qualifications very carefully. Apply in plenty of time to get feedback from family, guidance counselors and others. Board Member, Jacob Adams, would be happy to help if given at least two weeks’ notice. Please contact the office for his e-mail address.
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 Captain 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 Captain Ned if you are interested in a private fishing charter.
Any Teens with Sickle Cell Interested…
Dr. Noronha is trying to gauge interest from local teens with Sickle Cell Disease around having Zoom Meet Ups this summer. If you (or your child) is 13 years old - 17 years old and interested, please contact Dr. Noronha.
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
Follow us on social media:
Facebook: facebook.com/curekidscancerrochester
Instagram: @curekidscancer
Twitter: @curekidscancer_Write a review about C.U.R.E. on our Facebook Page or on Google.
Write a blog that can be shared on our website.
Contact our Parent Advocate Michelle about doing a Facebook Live or Instagram Takeover.
“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 1/3/2023, THERE ARE 14,862 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.
Petition to the Biden Administration to increase funding for childhood cancer research. This effort was started through awareness from The Ellen Show.
79,799 signatures of 150,000 wanted (as of 1/3/2023)
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.
Learn more about Bill A6430B
Creates the Sickle Cell Disease detection and education program
Sponsored by Hyndman
Sherman Elementary is COOL!
We are so grateful for our Friends at Sherman Elementary School! Lead by their amazing Student Council, the Sherman Community collected over $1,200 for C.U.R.E. through our Penny Drive! WOW! We are so grateful for your big hearts!
Thank you, Sip Up Advertising!
Roger Cole and Sip Up Advertising are helping us make a change to Families coping with childhood cancer or chronic blood disorder. They donated 500 color changing cups to our organization to use at various events. How cool is that?! Thank you for thinking of our organization and helping us spread our mission!
Thank you, T.J. Connor Elementary!
The school community at T.J. Connor Elementary blew us away with their kindness! They hosted a penny drive and collected over $100 for C.U.R.E.!
Fun Fact: They used a chocolate flavored protein powder container to collect their donations and all their money smelled like chocolate!
Your donation was sweet, Friends! Thank you for thinking of our Families!
Thank you, Small Business Council!
We were honored to be included in the Small Business Council’s networking event on March 22nd. It’s so fitting the gathering was at the George Eastman House, especially because it had a philanthropic component. George Eastman set the tone for philanthropy in our Community and we are humbled to have been included in the philanthropic efforts of the Small Business Council! Thank you for making such a meaningful contribution to our efforts!
5k and Fun Walk Volunteers Needed!
We are looking for Volunteers to help at our 5k and Fun Walk on Saturday, April 29th! Click the link below to learn about sign ups.
Our Friends need help stuffing eggs and during the event!
Come Tend to our Garden!
We are looking for Friends to come help honor our Angel Kiddos and take care of our Julie Roberts Children’s Memorial Garden. The sign ups are set for Sundays at 9 AM, but you can come any time you want during that week.
It’s so important that our garden looks beautiful for our little Angels. We are so appreciative of our Volunteers.
Caring for our garden includes pruning trees and shrubs and weeding the garden beds and Remembrance Walkway.
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 from 5:30 - 7:30)
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
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
Let the games begin!
We hope you’ll join us for our 14th Annual 5k and Fun Walk presented by Cornerstone Wealth Management with a NEW LOCATION this year!
We will be hosting the event at Meridian Centre Park on Saturday, April 29th!
The run begins at 9 AM with the walk starting shortly after. There will be a shorter alternate walk route available.
Enjoy the sights and sounds along the Erie Canal with this Family-Friendly Walk.
Calling all Teams!
We’d LOVE for you to form a team this year! The more, the merrier!
We are partnering with Bonfire again to offer Team T-Shirts. You design the front with your Team Name and Information and share with your Team Members. Shirts get shipped directly to them AND a portion of the sale is donated to C.U.R.E.!
Check out our great C.U.R.E. Champion Prizes!
The Top Individual Fundraiser gets:
A FULL TABLE TO ENJOY THE 15TH ANNUAL RECIPE FOR A C.U.R.E. SUNDAY BRUNCH presented by West Herr Cares on September 17th!
REGISTER TODAY
Whole Year & Event Specific Partnerships Available for 2023
We would LOVE to partner with you and your business! Reach out and we can chat about the opportunities we have available!
Event specific partnerships can be found on their respective pages:
Stay tuned for registration for the 8th Annual Patrick Carr Memorial Golf Tournament on July 24th. Registration opens May 1st!
Don’t forget the JOE!
Don’t forget to check out our Friends at Awareness Coffee Co.! They have many different coffee options AND you can support a cause you’re passionate about (we’re partial to the Pediatric Cancer Blend). A portion of the sale of the coffee will be donated to the charities listed under each cause.
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.
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.
Round Up for C.U.R.E.!
We are thrilled to share that we are now part of the Walmart Spark Good program! You can select “C.U.R.E. Childhood Cancer Association” as your charity of choice and round up your purchases! The rounded up change will be donated to C.U.R.E.!
STEP 1: Visit walmart.com/sparkgood and sign in to your Walmart.com account.
STEP 2: Search for a favorite charity.
STEP 3: Once you choose a charity, go to the Round Up box and click "Select this Charity"
STEP 4: Review the FAQs and the Terms of Use.
Sickle Cell Advocates of Rochester
C.U.R.E. Partners:
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:
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!
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.
Bereavement Group
Bereavement Group for April will be held at the C.U.R.E. office at 200 Westfall Rd, Rochester, NY 14620 No RSVP is required.
Please reach out to Michelle Magin at
michelle.magin@curekidscancer.com with any questions.
Did you know? For children who have experienced the death of a sibling from childhood cancer, SuperSibs offers additional mailings through the Grief and Loss Mailing Program.
This program includes...
💛 Grief support and resources specifically for parents
💛 4 mailings per year for two years with activities designed to help SuperSibs to cope with their grief and feelings
💛 A special remembrance on the anniversary of their sibling’s passing
Learn more about this free program for siblings:
Click Here To Check it Out
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
- SQUISHMALLOWS! ALL SIZES! The kids love them!
- Universal phone chargers with long cords
- 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!