October 2020 Newsletter
Welcome to the October 2020 Newsletter
Happy October, Friends!
WOW! September has come & gone in a flash. I’m hopeful you could see & feel the love from the staff here at C.U.R.E. this month as we worked tirelessly to raise awareness of childhood cancer & sickle cell disease this month. We had three amazing Instagram Takeovers where families shared their stories and information about their child’s disease. We had one Facebook Live video that shared the story of one of our Survivors. LOTS of facts and content on our social media platforms. Countless buildings turned their lights gold or changed their digital boards in front of their buildings to raise awareness. Several businesses worked with us to raise awareness & donate funds towards our mission. You are all fantastic & we cannot thank you enough. The truth is, we’d like to see Rochester go gold & red more & more every year, & with your help, that can happen!
We continue to be overwhelmed by the kindness of our supporters. This past weekend wrapped up our 12th Annual Recipe for a C.U.R.E. Event presented by West Herr New York. It was a beautiful (and hot!) day where vehicles came through our special drive thru to collect the delicious delicacies prepared by our friends at the American Culinary Federation: Rochester’s Professional Cooks and Chefs Association. The volunteers we were blessed to have for the day were fabulous & made the event an experience! Later, the Recipe for a C.U.R.E. Auction presented by the Gizzi Family of Companies (Advantech Industries, Big City Tees and Precise Tool and Mfg.) wowed us. While most organizations are canceling in-person events, we are reimagining our events so we can have some person-to-person contact because as humans, that’s what we need & are lacking these days. We at C.U.R.E. are different. When things seem tough, we strategize & move forward. We are innovative. We are problem solvers. We are an example to the community of how to effectively get a job done & to be creative in doing that. We at C.U.R.E. are different. We at C.U.R.E. stand out - whether it’s the unique, practical support we provide to our families or finding ways to be innovative as challenges arise. We are so grateful to you for coming along for the ride.
With a Grateful Heart,
Holly
Spotlight on: Jorie
Meet our friend…
This is Jorie! Jorie was diagnosed with Myelodysplastic Syndrome this year very close to her second birthday. Myelodysplastic syndromes (MDS) are a group of cancers in which immature blood cells in the bone marrow do not mature, so do not become healthy blood cells. She is currently in round 4 of 6 rounds of chemotherapy at Golisano Children’s Hospital. Despite the hardships she endures during chemo treatments, Jorie can usually be found smiling most of the day. Jorie and her family are thankful for the support from C.U.R.E. during their long hospital stays. To learn more about Jorie, check out the Instagram Takeover she and her family did on July 13th.
Bell Ringings
Hooray for Anthony!
On September 4th, we celebrated end of chemo with our friend Anthony!
It was so great doing his handprint ceremony in the office with his family by his side!
Congratulations, Kara!
We were so glad to share in Kara’s excitement as she finished chemo! She and her mother (and way too many bees!) joined us at our office on September 25th and did a handprint ceremony! We were happy to provide Kara with a special treat - Cosmic Brownies!
Way to go, Lucas!
We enjoyed celebrating Lucas’ end of chemo on September 23rd here at the office. He was joined by his brother, Chevy, his mom and his grandparents! They also enjoyed chips and treats!
Free Programming for Families
We are partnering with a local orchard to provide Apple Picking for our families. We have a few slots left on October 24th. You must RSVP at staff@curekidscancer.com for this event. First come first serve. Limited space available.
October Parent’s Day Out is going to be full of fall fun! Please join us for a corn maze where you can be physically distant, but also have a great time! Sunday, October 18th at 12 pm at Zarpentine Farms! You must RSVP to this event at staff@curekidscancer.com. First come first serve. Limited space available.
We’ve got you covered!
C.U.R.E. has been gifted filtered and unfiltered cloth masks as well as surgical masks! We have child sized cloth masks and adult sized surgical and cloth. If our families are in need of masks, please contact us to arrange getting you some! Send Adella an email if you are in need: Click me to email.
Our friends at Golisano Children’s Hospital sent us this great Toolkit to help parents explain mask wearing to their kiddos. Check it out here.
Donate Blood!
Many of our children depend on blood transfusions and blood products in the course of their treatment. With the recent pandemic, blood drives have been halted. Our children are still in need of blood products. Please consider donating blood if you are well enough to. Visit redcrossblood.org to set up an appointment time. They are adhering to social distancing guidelines to fulfill the need.
YOU can help C.U.R.E. for FREE
1) Follow us on social media:
Facebook page
Instagram: @curekidscancerTwitter: @curekidscancer_
(2) Write a review about C.U.R.E. on our Facebook Page
(3) Write a blog that can be shared on our website.
(4) Contact our Parent Advocates about doing a Facebook Live or Instagram Takeover
(5) “Like”, Share or comment on our posts on social media!
Imaginary Friend Society:
A cancer diagnosis is scary for anyone, but for a child it can be even scarier. They’re bombarded with terminology and procedures that are intimidating and unfamiliar. Things like radiation, hair loss, blood transfusions, chemotherapy, and surgery. Just to name a few.
That’s where the Imaginary Friend Society comes in: a cast of characters inspired by the imaginations of kids themselves. Through a series of 20 animated short films, our imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. Because the more they understand about their treatment, the less scary it will be. To learn more, click here.
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.
Free National Park Pass Application
You will be required to include a signed statement from a licensed physician stating that you have a permanent disability. Here’s an example statement (that should be printed on letterhead and dated):
To Whom It May Concern:
This letter is to certify that Name is a patient at the office/center. He/She has Type 1 Diabetes, which he/she is treated for here. If you have further questions or concerns, please call: XXX-XXX-XXXX.
Diabetes is a permanent and physical impairment that substantially limits one or more major life activities including, but not limited to, the operation of the endocrine and digestive systems (major bodily functions). As such, diabetes is a physical disability under the Americans with Disabilities Act (ADA), 42 U.S.C. 12102; 28 C.F.R. 35.104.
Signed,
Licensed Physician
The pass provides admittance to the pass owner and accompanying passengers (in a single, private, non-commercial vehicle) to more than 2,000 recreation sites managed by five Federal agencies. Photo identification may be required to verify ownership. At many sites, the Access Pass provides the pass owner a discount on Expanded Amenity Fees (such as camping, swimming, boat launching, and guided tours).
Free Lifetime Access Passes to US National Parks for anyone with Type 1 Diabetes (or other “disabilities”).
Clara Wang, a researcher at Carnegie Mellon University, is currently conducting a study on online educational resources for childhood cancer survivors. The purpose of the study is:
(1) to determine the sources of information the childhood cancer survivors and their family find most useful and use most often
(2) to determine the types of educational resources childhood cancer survivors find most beneficial.
The study recruits participants from childhood cancer survivors (or their siblings) who were diagnosed under the age of 19 and no more than 10 years post treatment. Participants are asked to fill out a 15-30 minute survey online. There is no compensation for participation in this study.
If you are a childhood cancer survivor or their family, please check out: THIS WEBSITE (Click Here) for more information and links to the surveys!
If you have any questions or concerns, please email: hci-research@andrew.cmu.edu.
Thank you!
For Fathers of Pediatric Oncology Patients:
This is a personal account of a father's struggle to try and save his son, Max, who suffered from two cancers. The author expresses his hopes, fears, and emotions during the illness, and the growing love that developed between them. He describes how it feels to be a parent of a cancer-stricken child and demonstrates the amazing endurance and courage of children undergoing cancer treatment.
Free to read as a digital download if you subscribe to Kindle Unlimited -
– Click here to learn more
Love came through at the 12th Annual Recipe For a C.U.R.E.
What an incredible day! Thank you to all who came through for our families this past Sunday for our 12th Annual Recipe For A C.U.R.E. presented by West Herr New York. It was so wonderful seeing your smiling faces. Thank you to all of our chefs, sponsors, donors, supporters, volunteers and board members who helped make this happen. Our hearts are overflowing with gratitude for you!
Our friend, Cat Kwiecien, did an absolutely incredible job putting together the auction. A HUGE thank you for your dedication to making the auction so perfect!
The Chefs from the American Culinary Federation showcased their talents once again! Thank you for sharing your delicious food with our guests!
We had a great time!
A wonderful time was had at our September Parents’ Night Out. Thank you to all of the C.U.R.E. Parents that participated and Rochester Pedal Tour for hosting us!
Upcoming Fundraisers:
Shop Amazon Smile!
Don’t forget to select “C.U.R.E. Childhood Cancer Association” as your favorite charity while shopping! We get a percentage of the sale. Easy peasy!
Did you know that you can now utilize Amazon Smile on your Amazon App?! Check it out!
C.U.R.E. + Astral Power
We have partnered with Astral Power to give our C.U.R.E. supporters access to renewable energy! The solar energy comes from the solar farm on Washington Street in Ogden. Once you sign up, your utility will automatically credit your utility bill for being a member, saving you a guaranteed 10% of your utility costs per year.
Signing up is easy:
(1) Call Rylea (585) 402-9313
or
(2) go to: https://www.astralpower.com/#signup
”How Did You Hear About Us” Select “Customer Referral” and enter “CURE” in “Referred By”
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!
It’s officially beanie season! Order your C.U.R.E. + Love Your Melon beanie today!
We have partnered with Love Your Melon to offer these EXCLUSIVE, LIMITED QUANTITY beanies! They’re one size fits most and super high quality! Support children battling cancer with your purchase: for every one hat purchased, Love Your Melon sends one to a child battling cancer!
Bereavement Corner
October Bereavement Meeting
Please join us for our bereavement group this month on Wednesday, October 7th, 2020. We will be hosting group at the C.U.R.E. office’s (200 Westfall Rd. Rochester, NY 14620) from 7-8:30 pm. Michelle Magin, C.U.R.E.’s Parent Advocate, Liz & Paul Conrow and Debra Zalar (bereaved parents), will be leading this meeting. For further questions, please contact Michelle at michelle.magin@curekidscancer.com .
Fallen Limb
A limb has fallen from the family tree.
I keep hearing a voice that says, “Grieve not for me”.
Remember the best times, the laughter, the song.
The good life I lived while I was strong.
Continue my heritage, I’m counting on you.
Keep smiling and surely the sun will shine through.
My mind is at ease, my soul is at rest.
Remembering all, how I truly was blessed.
Continue traditions, no matter how small.
Go on with your life, don’t worry about falls
I miss you all dearly, so keep up your chin.
Until the day comes we’re together again.
Author unknown
Wishlist 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 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!
- Toys (Please look at our Amazon Wish List (<— Click) for ideas and easy purchasing.)
- 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
- Weighted blankets
- Essential oils
- Mini diffusers
- Heating pads
- Crafts for young adults and children
- Facial Cleansing Wipes and body wash
- Items for teens or young adults
- Legos
We ask that all items be new and recently purchased. Thank you!