December 2020 Newsletter
Welcome to the December 2020 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: Logan
Meet our friend, Logan!
Logan is 4 years old recently diagnosed on November 2nd with APML, Acute Promyelocytic Leukemia (APML, APL) is a subtype of Acute Myeloid Leukemia (AML), a cancer of the white blood cells. In and out of the hospital, Logan enjoys playing soccer, racing his cars & trucks and games with his older brother, Evan. Logan is a spirited and sweet little boy.
Free Programming for Families:
Holiday Celebration
Families: don’t forget about our Holiday Drive Up event on December 9th!
Check your email for more information!
Holiday Meal Assistance:
Click here for a listing of the available resources in the Rochester Community for Thanksgiving and Christmas meals this year.
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 us 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: facebook.com/curekidscancerrochester
Instagram: @curekidscancer
Twitter: @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 Advocate 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
Pops4Patients
Meet our friend Dan! Last year Dan started Pops4Patients which collects Funko Pops and toys and it has blown up! We are honored to be on the receiving end of his efforts and our kiddos will love receiving these fun little collectibles this year!
WOW! Thanks, Ashley & her Usbourne Books Team!
We are the gracious recipients of 65 Cuddle Bears and 68 Cuddle Bear Books thanks to the Book Drive Ashley and her team did. Our kids are going to love these!
NRG East, We think you’re sweet!
Thank you for holding your annual Dessert Auction to raise proceeds for a local charity. We are thrilled to be the recipient of donations. We appreciate your kindness. Thank you for your pivoting and being creative in facilitating the Auction once again!
Thank you, West Herr Auto Group!
Our friends at West Herr Auto Group donated 25 turkeys to our organization for our C.U.R.E. Families to have for Thanksgiving! We are so grateful for our friends, especially Board Member Dan Dettorre, for coordinating and thinking of us.
Thank you, The Great Escape Room!
Eight of our C.U.R.E. Parents enjoyed a night out at the Great Escape Room on November 12th!
Team C.U.R.E. are now the record holders for this room, finishing their mission in record time!
Thank you to the Andrews Family!
Last week the Andrews family drove up from Elmira, NY with a huge haul of toys for our kids. They were collected by Grace’s Warriors, in honor of their daughter Grace who passed away in 2016. This donation will bring lots of magic to our families this season.
Thank you, AWANA Club!
Thank you to our young friends from the Wheatland Community Church AWANA Club who collected items for our kids! The AWANA Club is similar to Girl Scouts or Boy Scouts, but is faith-based and focused on community service. Other service projects they’ve completed are raking leaves, making cards for nursing home residents, caroling at nursing home, collecting food or toys. We appreciate you thinking of us!
Thank you, CURE Bears for Hope & Love
Earlier in November, our long time friends, Lynne & Randy dropped off a huge donation of toys for our C.U.R.E. kids and sibs! We are so grateful to have their support this holiday season, it’s will surely bring smiles :)
Quilts of Comfort
Thank you to our friends from Quilts of Comfort in Victor, NY for creating 20, one of a kind quilts for our kids. These are made with love and will keep anyone warm and cozy this season. Thank you quilters for these beautiful works of art!
Our hearts and heads are warmer because of Hatsgiving! Thank you to this incredible organization who sends the cutest winter hats to our C.U.R.E. families!
Mark your calendars for C.U.R.E. events! 2021 is just around the corner.
2020 Holiday Heroes:
Our Holiday Heroes Campaign is kicking off! Recognize a Hero in your Life publicly through a donation to C.U.R.E. and your Hero’s name and message will be included in the Messenger Post newspaper right before Christmas!
To learn more, click here.
We hope you’ll think of us as you shop this Holiday Season!
Don’t forget to select “C.U.R.E. Childhood Cancer Association” as your favorite charity while shopping with Amazon Smile! We get a percentage of the sale. Easy peasy!
Did you know that you can now utilize Amazon Smile on your Amazon App?!
Click here for our Wish List items for our families this Holiday Season.
Shop Embrace the Difference
Holiday shopping is easy and meaningful with a gift from Embrace the Difference® and that each piece can financially support your organization!
Let kindness unite us no matter our differences!
Check out some of our 'NEW" ARRIVALS including MADE IN ITALY GEMSTONE BRACELET COLLECTION!
https://www.embracethedifference.org/collections/new-arrivals
Embrace the Difference® is available at ReedsJenss locations or shop safely
online at EmbraceTheDifference.org
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
January Bereavement Group
Please join us for our bereavement group this month on Wednesday, January 6th via Zoom, from 7:00 - 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. Please check your email for the Zoom link or contact the C.U.R.E. office to receive it (staff@curekidscancer.com).
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 Lists:
Under $20: https://a.co/hlW4hCO
$20 - 50: https://a.co/eHiQcV2
$50+: https://a.co/bVDujCy)
- 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
-Fabric Markers
We ask that all items be new and recently purchased. Thank you!