July 2020 Newletter
Welcome to the July 2020 Newsletter
C.U.R.E. is here for you.
We appreciate your patience during this time as planning is not concrete and things are changing in our environment so quickly. We hope to continue bringing you meaningful content as well as assistance to our families throughout these uncertain times. Remember, we are in this together.
What a pandemic cannot do: Stop us from celebrating our Kiddos.
What a pandemic cannot do: Hold our volunteers back from letting our families know how great they are.
What a pandemic cannot do: Deprive our community partners the opportunity to recognize the strength of our families.
We are honored to represent an organization that is being innovative and still bringing a level of care to our families that is unprecedented and not duplicated. Since the COVID-19 crisis began, we have conducted a Drive By Easter Egg Hunt (200+ miles across Greater Rochester), numerous Zoom meetings with our families (both for informal social meetings and our monthly bereavement), regular virtual check ins by our Parent Advocates with our families daily, coordinated porch fairy drop offs for over 50 of our C.U.R.E. moms across Rochester and the Southern Tier, collected and distributed over 200 face masks to our families, executed one of the first virtual 5ks in our community, helped families celebrate end of chemo with parades and through providing bells, and planned and executed our Survivor's Day Drive Thru Celebration. We recognize that tough times call for innovation and our families need us. I'm hopeful our community continues to support us & our mission.
Support Info for C.U.R.E. Families:
When your child is diagnosed with cancer, your first priority is to keep him or her happy, comfortable, and in the best possible state of health. While you are prepared to devote your personal energy to that end, cancer treatments are expensive. If you or your spouse/partner are required to take time off work to provide direct care, the family finances can (and likely will) suffer, adding to the stress.
The good news is that parents who are caring for a child with cancer may be eligible for Supplemental Security Income (SSI) benefits. SSI is a Social Security Administration (SSA) program that provides monthly payments to children who are disabled or have special needs. If approved, the family will receive support in the form of:
● Financial benefits
● Access to Medicaid for the child in most states
● State programs for children with health issues
SSI is a needs-based program aimed at those with limited assets and financial resources. If you and/or your child’s other parent apply for benefits on your son or daughter’s behalf, your family income and assets will be evaluated. If your household income exceeds a certain threshold, your application may be rejected.
Once your child turns 18, however, parent income is no longer taken into account and your child is much more likely to qualify on their own.
For more information on how to apply for SSI benefits on behalf of your child, visit the SSA’s website, visit your local SSA office, or call the SSA toll-free at 1-800-772-1213. After he or she is approved and the monthly payments begin, you can provide the support they need without money worries clouding your days.
Where to find Foodlink’s Emergency Food Supply Boxes
Foodlink has scaled up its food banking operations in response to the COVID-19 pandemic in order to meet the rising need in our communities. In doing so, they have had to pivot away from some of our traditional distribution models in order to mitigate further spread of the Coronavirus.
Click on the link to read more:
https://foodlinkny.org/where-to-find-foodlinks-emergency-food-supply-boxes/
Bell Ringing Celebrations:
Spotlight on: Victor
About our friend…
Victor is a teenager who was diagnosed with A.L.L. in June of 2019. He recently just started his maintenance therapy which means he has to visit the hospital outpatient clinic much less often. He went from weekly appointments to monthly appointments! He has had a few bumps in the road but he hasn’t let that discourage him. Victor is excited to begin to start doing the things that he has missed while in treatment. He just got his fishing license, so he is happy to start fishing. He enjoys playing soccer with his friends as well. Victor’s favorite thing might be his Nike shoes! He always is talking about about which ones he is going to get and he has quite the collection! He is looking forward to returning back to High School with his friends, hopefully in the fall. Most of all, he is looking forward to not having to take anymore pills next year as his treatment should be completed!
In need of face masks?
We have 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.
You can support C.U.R.E. in more ways than you think!
(1) Follow us on social media:
Facebook page
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 Advocates about doing a Facebook Live or Instagram Takeover
(5) “Like”, Share or comment on our posts on social media!
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”
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.
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.
Connect virtually!
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.
Mama Medium
C.U.R.E. had the honor of hosting, Mama Medium, Jennie Marie, for an amazing experience for a few of our families. She was also kind enough to partner with us on a Zoom Fundraiser. Thank you for supporting our families! To learn more about Jennie Marie, be sure to check out her website here.
C.U.R.E. + Rochester Knighthawks
During the month of June, we have #EmbraceTheFighters and have highlighted some of our kiddos, ran a contest to offer a free dinner raffle for our C.U.R.E. Families and planted flowers in our Julie Roberts Children’s Memorial Garden. Thanks to the generosity of the Rochester Knighthawks and the Pegula Family, we have been able to purchase dinner from locally owned restaurants for our dinner raffle winners:
Week 1 Winners: Olix Family (Giovanni’s)
Week 2 Winners: Statt Family (Grandpa Sam’s)
Week 3 Winners: Putney Family (Daryl’s Pizzeria)
Week 4 Winners: Mannara Family (Bad Apples Bistro)
Upcoming Fundraising Events:
Christmas in July!
We want to support LOCAL businesses and YOU can help?
How can you spread cheer loudly for all to hear?
(1) Purchase a gift card from your favorite LOCAL business
(2) Mail or deliver your gift card to our C.U.R.E. office (200 Westfall Road, Rochester, NY 14620) the week of July 20th - 24th and you will see our fun decor and possibly get a treat!
Gift cards will be used to bring sunshine to our C.U.R.E. families AND in our big auction this September, which raises money to help our families!
We can’t wait to see your favorite businesses!
The 5th annual Patrick Carr Memorial Golf Tournament is HAPPENING!
Social distancing guidelines are being cautiously followed to ensure a safe and fun golf tournament! All foursomes are SOLD OUT, but sponsorship opportunities are still available.
GET YOUR MOTOR RUNNING!
Ride out the last days of summer in our annual Poker Run! Event kick off at Rush Creekside Inn at 10am. $15 per rider / $5 for passenger. Classic cars welcome!
Want to partner with us on this event? We are looking for raffle prizes and sponsors! Reach out to our Event & Community Coordinator, Sara Harrison via email.
Support C.U.R.E.’s mission…
Come tend to our garden!
What a great way to practice social distancing and make our Julie Roberts Children’s Memorial Garden beautiful. We could really use some help with weeding, pruning and getting our garden ready for the season. To ensure our friends are practicing proper social distancing, please sign up on our online form. Click below. Duties include weeding the front and the back gardens as well as pruning our bushes! Please also call the office if you are in need of tools or supplies. We have limited tools, but call us - we’ll chat (and basically, we miss people…so feel free to call!).
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!
Shop at Rite Aid and round up your purchase for C.U.R.E.!
KIDCENTS ENROLLMENT INSTRUCTIONS:
1. ENROLL IN THE wellness+ rewards PROGRAM
• Visit www.KidCents.com and click the “Start Rounding Up Today” button on the left
• Click the box on the right to “Enroll in wellness+ rewards or Register Your Card”
• Complete the registration process for wellness+ rewards
2. ENROLL IN THE KIDCENTS ROUND-UP PROGRAM
• Return to www.KidCents.com, where you should see you are already logged in on the left
• Click the “Start Rounding Up Today” button
3. DESIGNATE YOUR CHARITY
• Click “Select a Charity” on the left
• Type “CURE Childhood Cancer Association” in the search bar and press enter • Click “Select this Charity” beside your organization
4. CHANGE YOUR PREFERENCES TO ROUND UP EVERY TIME YOU SHOP
• Click “My Change” on the left to see a history of your transactions
• Click “Automatically round up my purchases” on the bottom right under Preferences
C.U.R.E. has been the gracious recipient of funds from the RiteAid KidCents Foundation for the last few years. The kindness of this foundation has furnished our office with new laptops, which were INCREDIBLY helpful as we worked from home the past few months!
Embrace the Difference
It’s kind to #stayhome! Now more than ever the charities and organizations in our communities need our support. We’re releasing a limited edition run of new designs that support the stay at home order that is uniting our nation. A variety of tees, tanks and sweatshirts are available now in colors that will lift your soul!
For these limited edition apparel items, $10 from every purchase is donated to the participating charity of your choice.
CauseWash
Purchase three car washes through the link in the button below and HELP LOCAL FAMILIES! If you typically get your car washed at Classy Chassy, Delta Sonic or LaserWash, you can give back to families all while getting a deal on your washes! Click below to learn more!
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. Now that the weather is improving, we hope to see all our friends rocking these socks around town!
Exclusive partnership with Love Your Melon!
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
July meeting
Please join us for our bereavement group this month on Wednesday, July 1st, 2020. We will be hosting group outside at the C.U.R.E. office’s Julie Roberts Children’s Memorial Garden (200 Westfall Rd. Rochester, NY 14620) from 7-8:30 pm. Kiersten Kunick, C.U.R.E.’s Parent Advocate, Liz Conrow & Deb Zalar (bereaved parents), will be leading this meeting. For further questions, please contact Kiersten at 585-697-4470.
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!
- Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
- Gift cards for GrubHub, McDonalds, Wendy’s, Taco Bell, Burger King, Moe’s, Chipotle, Dunkin Donuts and Starbucks
- Musical instruments (our kiddos are BORED!! We would love to offer instruments to keep them busy while they are isolating. Used instruments are fine as long as they are in working order. Preferably no wind instruments as disinfecting would be difficult).
- Weighted blankets
- Essential oils
- Mini diffusers
- Heating pads
- Crafts for young adults and children
- Paper towels and toilet paper
- 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!
