November 2020 Newsletter
Welcome to the November 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: Ryker
Meet our friend, Ryker!
Ryker is 5 years old and was diagnosed with Acute Lymphoblastic Leukemia B Cell. “We came to his diagnosis when he was 4 years old as an on and off fever and for Ryker that was really odd. Three weeks of back and forth with his doctor and we decided to do a blood panel to rule a few things out. Less then 24hrs later we found ourselves at Strong Pediatric Emergency for his official diagnosis. At that time, he was your typical 4 year old attending preschool. Ryker was scared and confused. He had a super hard time wrapping his head around being "sick" when most days he felt good. Ryker is currently in Interim Maintenance II. Every treatment he goes through hits differently even if it’s one he has received regularly. He has his ups and downs as they all do but, he’s definitely my little warrior and a huge inspiration to all of those around him.”
Currently Ryker is attending his remote learning classes, art and science are his favorite subjects. His list of favorite things includes, dinosaurs, Lego’s, science projects and video games. When he grows up he want’s to be a Ninja Policeman!
We say, go for it Ryker!
Free Programming for Families
Holiday Celebration
It will look a little different this year, but keep a look out for our socially distant Holiday Celebration: Station Style Event.
New location this year, but on the same day: Wednesday, December 9th.
We will assign time slots for families to arrive.
Bring your letter to Santa and you can leave right in his mailbox!
Stay tuned for more information!
Interested in volunteering? We have volunteer needs (especially for Helper Elves!). Email Holly (holly.dutcher@curekidscancer.com) if you are interested.
C.U.R.E. Families: Free Turkeys!
Our friends from West Herr Ford are giving our families turkeys!
If your family is interested in a free 10 pound turkey this Thanksgiving, please email Holly to reserve yours!
(holly.dutcher@curekidscancer.com)
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
Thank you, Undersheriff Brown!
Undersheriff Korey Brown ran a 5k a day during the month of September and dedicated each run to a local child who has battled or is battling cancer to raise awareness of Childhood Cancer Awareness Month. His efforts generated over $4,800 in donations to our organization! We are so incredibly humbled and thankful. Thank you for not only raising money for our families, but more importantly, shining a light on childhood cancer!
Thank you, Zarpentine Farms!
We had a fun Parents’ Day Out on Sunday, October 18th at their Corn Maze! Our Parents enjoyed donuts and cider and found their way through the maze!
Thank you, Riley Joy Candle Co!
We are so thankful for Sarah and her company, Riley Joy Candle Co., for her partnership this past September for Childhood Cancer Awareness Month. She developed a divine smelling candle to help raise awareness of Childhood Cancer and donated a portion of the proceeds from the month to our organization. We are the humble recipients of $422 from sales! Thank you, Sarah. We think this is the beginning of a beautiful friendship!
She has some amazing products that would make great holiday gifts. Be sure to check out the full array of products and scents she has available.
Thank you, Whittier Fruit Farm!
Many of our families enjoyed the fruits of our region on October 17th and October 24th!
We ate delicious apple cider donuts, rode on a wagon out to the orchard and picked from a wide variety of apple types! Both days were fun for our families who came out!
Upcoming Fundraisers:
Race With Grace (Virtual) 10k
Unfortunately, given our current environment, we are unable to hold the annual event as planned. As such, there is a special virtual edition of the Race With Grace 10K being offered to our dedicated supporters! Be sure to check out the website to register and learn more info:
A huge thank you to the dedicated Race With Grace committee who is forging ahead given the constraints this year with the hope of continued funds raised for our families!
The comfiest time of the year is back!
From November 1st - November 22nd, go to peachskinsheets.com.
Sheet sets are $85/set.
Use discount code “CURE” at checkout for $20 off your sheet set (drops down to $65/set).
$20 will be donated to C.U.R.E. for every sheet set sold.
(discount does not apply to colors of the month)
Happy shopping!
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.
Adopt a C.U.R.E. Family:
We are working on bringing the Holiday Spirit in full force to our C.U.R.E. Families this year. Please contact Holly (holly.dutcher@curekidscancer.com) if you would like to adopt a family for the holidays.
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.
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
November Bereavement Group
Please join us for our bereavement group this month on Wednesday, November 4th 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).
Our December Bereavement Group will also be held via Zoom on Wednesday, December 2nd. We will be making a DIY holiday ornament. Kits can be picked up at the office or mailed to your home. RSVP required by November 13th (to ensure we purchase enough kits and mail them in time). For further questions, please contact Michelle at michelle.magin@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 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
-Fabric Markers
We ask that all items be new and recently purchased. Thank you!