January 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.
Spotlight on: Matteo
Meet our friend, Matteo.
For the first seven months of Matteo’s life, I (mom) took him to the emergency room 4 times for what I thought were seizures, but actually neurological defect causing Clonus. The little boy that rolled over at 12 days old was extraordinarily strong and while everyone saw those strengths, I also noticed the many things: a slightly off pupil, a soft-spot that seemed to swell randomly, night time seizures, inability to look me directly in the eyes when up close. At about 6 months he suddenly stopped bearing weight and then the doctors became concerned. Two weeks later, my husband and I sat in a room at GCH and were told “Well good news is it’s not cerebral palsy, but we found a lesion in his spinal cord. He has cancer.” There is no way to explain the weight of those words, the look you give your partner, the devastation of a future you had envisioned for your family. We soon found out it wasn’t a cancer that had been classified or truly seen before. His biopsy was sent to NYC and then to Germany where not even the WHO could determine exactly what it was. My son had an undiagnosable high grade intramedullary spinal cord tumor that started in the C7 and went to the T10. There was no way to remove it without killing him and there was no prognosis. There are also no words for the fear and anxiety that brings.
A note from Holly…
Happy New Year!
It has certainly been a whirlwind of a year and looking back, we are so grateful we had the opportunity to gather with our C.U.R.E. Families and Friends once again! While the past several years have been uncertain, 2022 brought some “normalcy”. We loved seeing parents gather at Parents’ Night Out. It was heartwarming to see our Families together again at our annual Survivors’ Day Celebration in June. It meant so much for us to be able to gather and congregate to remember our Littlest Angels at our annual Remembrance Service. Seeing the smiles on Parents’ and children’s faces at the Holiday Celebration was the icing on the cake of a wonderful year. We are beyond grateful for our Community’s continued commitment to our Mission and the work we do. Thank you for believing in the staff of C.U.R.E. and the love we share with our Families.
Cheers to a wonderful year ahead!
C.U.R.E.’s Annual Holiday Party
The Holiday Party was held again this year at the Roger Robach Community Center on December 7th and was an evening filled with Polar Express themed activities. The Shortsville Reindeer and the Dainty Donut Factory made a return visit this year and were loved by everyone. The Kiddos and their Families even wore their pajamas! Everyone loved Santa, as always! There were Polar Express books, train crafts, an italian dinner to go, cake and mug crafty fun, along with hats, books, gifts and more. There was even a drawing for a train set for one lucky winner. The newest addition was the Hype Booth where Families could get their pictures taken together and they were even able to leave with a copy of the photo. Smiles filled the evening and laughter echoed through the building. We hope that you all have a Happy New Year!
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 Carol Austin 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
Holiday Heroes 2022
We are so grateful to those who contributed to our organization this past holiday season in recognition of the Heroes in their lives! We, again, partnered with The Messenger Post and the Democrat and Chronicle with our campaign. The campaign was printed in the Democrat and Chronicle on Thursday, December 29th and over the Christmas Weekend in the Canandaigua Post!
Santa’s Workshop for Hospitalized Children: 30+ Years of gifting smiles
A huge thank you to Florence and her Special Helpers who, once again, delivered toys and clothing to gift to our C.U.R.E. Kids and Sibs! We are so grateful for their kindness and their commitment of 30+ years to the community!
We are SEW grateful!
We are so grateful for our Friend Nina who made these fantastic pillows for our C.U.R.E. Kids. She really used her sewing talents and picked out the cutest fabric, too! We appreciate she and her mom making the trip to our office to drop these off for our Comfort Bags!
Thank you, Rotork!
We are grateful to our Friends at Rotork who shopped off our Amazon Wish Lists this holiday season. Cyndel, an employee of the company, spearheaded the group shopping off our lists AND delivered a car full of love to our office! Thank you for making the holidays brighter for our Families!
Grateful for Gifts Galore!
Our new friends at Herrema’s Market are just fantastic! They orchestrated a toy drive to benefit C.U.R.E. Kids this Holiday season. They also planned a fun day in December where patrons could get free wagon rides and they showcased several local vendors with free samples! What a great neighborhood grocery store! Be sure to check them out and show them some love in return.
NRG Rochester is sweet!
The Dessert Auction held by NRG Rochester sure was sweet! This wonderful networking group, that has been in existence over TWO decades!, donated proceeds from their annual Dessert Auction to C.U.R.E. This Holiday season. If you’re looking for networking opportunities and want to meet with a group who are thoughtful in the community and together, check them out!
Thank you, Goal Keeper Performance Training
WOW! WOW! WOW!
We are blown away by the kindness of Goal Keeper Performance Training who held an apparel sale recently to generate donations for C.U.R.E.! They raised over $800, which makes such a difference to our Families! THANK YOU for thinking of us and including us in your fundraising. We are truly humbled!
Julianne’s Journey to Christmas Joy delivers!
Julianne’s Journey delivered BIG once again with LOTS of toys and gift cards for our Families. This endeavor was started after the loss of Julianne Miller, who sadly passed away on December 24, 2010. Her family shares her beautiful spirit through collecting donations that we distribute to C.U.R.E. Children and their siblings through the holidays.
Nursing Students helping Kids!
A group of Palliative Care Junior Nursing Students at St. John Fisher University reached out to our organization early in the Fall Semester looking for opportunities to help our Families. They conducted a fundraiser to raise enough funds to provide every Family at our Holiday Celebration a gingerbread house kit - allowing our Families to enjoy time together doing something fun for the holidays.
It’s cool to be tacky!
On December 8th, it was cool to be tacky at Nosh. We had such a great time raising awareness and funds for C.U.R.E.! A special thanks to Corey James, our Celebrity Bartender, Spectrum Sounds (for providing the photo booth) and Tito’s and Southern Glazers Wine & Spirits for your donations. Board members Diane, Brenda and Brian in addition to Friend of C.U.R.E., Donna, for planning this fun event!
The Holidays WERE Bright!
We are so grateful for the support of our Community! We were able to connect 72 Families with Holiday help this year:
26 Families were connected to Anna’s Wish Foundation through C.U.R.E.’s Parent Advocate Michelle and Program Coordinator Carol
30 Families were connected to Private Sponsors from the Community
16 Families were sponsored through donations and purchases from C.U.R.E.
Each of the Privately Sponsored Families and C.U.R.E. Shop Families were given a bag of food staples plus a $25 Wegmans gift card as well!
Thank you, ENACTUS!
St. Bonaventure ENACTUS held their annual Canvas for a CURE event this past fall. Students and community members are invited to make a donation and then paint a canvas, all of which are donated to C.U.R.E. The canvases are given to C.U.R.E. Kids throughout the year to brighten their days! We are so appreciative of this event and for the awareness raised through Canvas for a CURE. Thank you to Dr. Todd Palmer, Alli Lefebre and the students at Bonas for continuing to think of our children. As Dr. Palmer shared on his Linked In page: “Painting the picture makes us slow down and think about the child and their family. A fundraiser has to be more than just a fun activity. It needs to be meaningful.
It's all about empathy.”
Thank you, Hutter Family!
A HUGE thank you to the Hutter Family who donated $1,900 worth of Dot Dot Smile dresses and clothing to our organization for our C.U.R.E. Kids! We are so very appreciative of their kindness and our Kiddos LOVE these clothes! Thank you for the generous donation!
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
We have a limited amount of FREE tickets for our Families. Stay tuned to the closed Parent to Parent Facebook Group and your email to learn how to claim yours.
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.
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
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.
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:
Winter is HERE…
Get a-HEAD of the season and order your Love Your Melon + C.U.R.E. Beanie today! It’ll be winter before we know it.
These make great Holiday gifts, as the quality of Love Your Melon Hats is second to none. Wash and dry your hat as needed.
The best part? For every beanie purchased from Love Your Melon, they GIVE one to a child battling cancer!
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 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 on January 4th, 2023.
For more information, please reach out to Michelle Magin.
michelle.magin@curekidscancer.com
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
- Colored pencils/art pencils
- 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!
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!