April 2020 Newsletter
We are in this together.
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.
To our dear C.U.R.E. Families & Friends…
C.U.R.E. is here for you.
We will do everything we can to be here for you every step along the way of this uncertain time. We understand the whirlwind of feelings that are likely going through all of your heads. They’re going through ours, too. But we want you to know: We are in this TOGETHER. I wish I had something profound to share with all of you - to ease your fears, to quiet the voices in your heads, to let you know that this will all be over soon. In situations like this, “HOPE” shows its importance. All we can do is hope that the light at the end of the tunnel is approaching. Hope that we will all get out of this unscathed. Hope that brighter tomorrows await us. I invite all of you - our C.U.R.E. Family - to share your messages of hope with us. Does hope come to you in the form of a drawing from your child? Does hope come to you in the form of a robin outside your window? Send us your photos and messages. We will share them with our community on our social media accounts. Let’s do what we can to keep hope alive.
Please do not hesitate to reach out to our staff during this uncertain time. We will do what we can to provide support.
Kiersten (585)697-4470 or email: kiersten.kunick@curekidscancer.com
Michelle M (585)697-4836 or email: michelle.magin@curekidscancer.com
Adella: adella.ivison@curekidscancer.com
Sara: sara.harrison@curekidscancer.com
Michelle F: accounting@curekidscancer.com
or myself (Holly): holly.dutcher@curekidscancer.com
Thinking of you all during this uncertain time. Sending love to all of you.
Please remember to be kind to those around you. Patience, Kindness and Hope will get us through.
With a Grateful Heart,
Holly
We are staying connected!
A note from Board Member, Dr. Jacob Adams
The novel coronavirus (COVID-19) has made it a particularly scary time for families with children with cancer or chronic blood survivors and survivors of childhood cancer, like myself. Luckily, the Children’s Oncology Group has recently come out with information sheets tailored to each group and they have been helpfully distributed by our friends at Children’s Cancer Cause, a Washington D.C based national advocacy group.
The links to the information sheets are here:
COVID-19 and Your Child, Teen, or Young Adult with Cancer (PDF)
and here COVID-19 and Cancer Survivors: What Do I Need to Know? (PDF)
The information largely reiterates what the Centers for Disease Control and Prevention and the Monroe County Department of Public Health are telling the general public and those at risk. As a Preventive Medicine doctor, epidemiologist and survivor, I cannot reiterate how important it is for your family to practice.
· Frequent Hand Cleaning
· Social Isolation
o including reducing hugging and kissing within your family and especially amongst those who have to go out in the world and those in closest contact
with your child at risk (as well as the child her/himself)
o Limiting visits to your child even from grandparents and close families. If you depend on them for care, insisting/strongly encouraging that they
practice pretty strict social isolation on their own time
· Frequent disinfecting of high touch area
Other helpful hints:
· Work from home if you can
· Try to limit grocery shopping and other reasons to go out to a store once a week
· See if you have friends who will get groceries for you and leave them outside your door after contacting you that they have dropped them off
· Plan ahead—How could you isolate someone in the house if they showed symptoms or your child with cancer? Could you send your child (or alternately the sick person) to a friend or family member’s house where they could be isolated better from your child
· Please don’t be too proud to ask for help from us at C.U.R.E. Even if we cannot see you in person, we can hopefully help you problem solve
· Please don’t be too proud to ask for help from agencies such as Foodlink or other social service agencies
· Reach out to your faith communities for support
· Watch silly videos, read fun books
· Frequently reach out to friends via phone, internet, text or letter
· Limit how much news you listen to each day if it makes you anxious
Remember you have had the strength to deal with you child’s cancer or a lifelong blood disorder, so you likely have the emotional resources to handle this new challenge as well. We at C.U.R.E. will do what we can to support you.
Jacob Adams, MD, MPH
Board Member, C.U.R.E.
Childhood Cancer Survivor 1977
Thank you, Allie & Katie!
Who would have thought that when our two incredible interns left for their spring break on Friday, March 13th, it would be their last day?! These young women brought sunshine to the office every day. They worked extremely hard on the annual Kids Helping Kids Penny Drive, while doing lots and lots of behind the scenes work for our events and mailings. We would throw a lot of tasks at them on a daily basis and they were always organized and one step ahead.
Both are Seniors at SUNY Brockport and will officially graduate in May with a Health Science degree. Hearing that graduation ceremonies are postponed for now, we know that is a huge let down for each of them. They are both very proud of the work they’ve accomplished within their 4 years at SUNY Brockport and they deserve that moment of walking across the stage!
From all of us at C.U.R.E., we hope to one day send them off properly and thank them for all their hard work! To Allie & Katie, THANK YOU for all you have done for our C.U.R.E. families. In the meantime, we are sending well wishes and love as they face the reality of not having a formal graduation to celebrate their successes. Please don’t be a stranger!
Spotlight on: Ethan
Ethan is an incredible 11 year old who loves Jesus, the Yankees and art. He is always smiling and bringing joy to others. He has been battling brain/spinal cancer since 2018.
Filtered Face Mask Donation
Families,
We were contacted by SewMasksRochester who are willing to donate child-sized, filtered masks for our kids. If you are interested in receiving a donation, please reach out to Holly via email.
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.
Options to Support Medicaid Members with Limited or Lack of Access to Devices & Services:
Shop Amazon Smile, and give to C.U.R.E. every time you shop!
How to set up your Amazon Smile account…
1) Go to smile.amazon.com and login with your existing Amazon account or create a new one using your preferred email address
2) Search for C.U.R.E. Childhood Cancer Association, Rochester NY
3) Check the box acknowledging that you must visit smile.amazon.com each time you shop
4) Start Shopping! 0.5% of all your orders will go to C.U.R.E.!
Dance for Sickle Cell:
World Sickle Cell Day – SAVE THE DATE: DANCE FOR SICKLE CELL
JUNE 20TH, 2020
4:00 - 7:00 PM
Frederick Douglass gym
999 South Avenue - Rochester, New York
June 19th was officially designated as World Sickle Cell Awareness Day.
The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers
*More details to come
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.
Momentum Newsletter:
The Fall/Winter 2019 Momentum Newsletter put out by Damon Runyon Cancer Research Foundation has 3 of the most highly regarded pediatric/young adult cancer researchers featured in their publication. If you are interested in reading what these committed doctors are currently researching, please go to the Damon Runyon Cancer Research Foundations’ web site:
Opportunity for Future Songwriters:
Over the past six years, almost 100 kids have collaborated with Hear Your Song on their very own songs. Our goal is to show kids how much their voices matter and to let the whole world know it, too!
Hear Your Song is going virtual and we are hoping to provide this opportunity for free to as many kids as possible, whether they are currently hospitalized for any reason or sick or immunocompromised at home. By visiting www.hearyoursong.org, families can request a song, either scheduling a video session with a Hear Your Song Artist or submitting lyrics or song ideas online.
Upcoming C.U.R.E. Programming and Events
Come along for the ride on April 25th, as we host our very first VIRTUAL 5K & Fun Walk!
With new event restrictions due to COVID-19, the 5K & Fun Walk will go virtual! This means you can participate on April 25th at anytime virtually anywhere! Plan your 5K around your neighborhood, local trails, tracks or treadmills, with who ever you like (social distancing, of course) at anytime in the day. Don’t forget to register!
Participate by simply documenting your run by tagging C.U.R.E. (on your social media account: @curekidscancer_ is our handle for Twitter & Instagram) and use the hashtag: #CUREVirtual5K on your social media accounts. Remember to list WHO you run/walk for in your post. We encourage all families to create & wear their team t-shirts, colors or costumes as we will be missing the annual t-shirt parade this year.
We also encourage families to "chalk your walk" with special messages dedicated to C.U.R.E., our kids or those you dedicate your walk for. Please post those to social media, too!
Finally, check out new “Family” pricing on the race website!
No bunnies happy about this!
:(
Julie Roberts Children’s Memorial Garden:
After winter, our beautiful Memorial Garden needs some tender care!
Please sign up and help us keep the Julie Roberts Children’s Memorial Garden a beautiful place for everyone to enjoy.
You’ll need to bring your own gardening tools and supplies.
Please feel free to pick any time and day within each week that is available, to sign up.
April Book Club:
Set in Depression-era America, a breathtaking story of five extraordinary women and their remarkable journey through the mountains of Kentucky and beyond.
April Book Club:
Open to all C.U.R.E. parents & caregivers past and present.
Meeting:
Wednesday, April 29th at the C.U.R.E. office (200 Westfall Road)
from 6:30 p.m. - 8:00 p.m.
* Notice the date change!! - May also be a Facebook Live meeting depending on the status of our community at that time.
* The auto version of this book is available at Chirp Books
Please let Adella know if you'd like to come!
585-473-0180 or adella.ivison@curekidscancer.com
We would love for you to participate! Can't get the book? LET US KNOW! We will work with you to get you access to a copy!
Mother’s Day Night Out:
Bold Brow & Beauty Lounge
C.U.R.E.’s Mothers’ Day Night Out will be held at Bold Brow & Beauty Lounge (842 Long Pond Rd., Rochester, NY 14612) on May 4th, 2020 from 6PM - 8PM
RSVP's are required!
Please contact Adella at Adella.ivison@curekidscancer.com or give the office a call at 585-473-0180
Space is very limited. First come first serve.
* Please note: subject to change depending on the status of our community.
C.U.R.E. Family Event:
Mark’s Pizzeria in Victor
Mark’s Pizzeria in Victor at 6499 NY-96 is hosting a family event learning how to make pizza!
It will be May 16th, 2020 starting at 11 AM.
If you are interested in attending this, please contact Adella at Adella.ivison@curekidscancer.com to RSVP.
First come first serve! Space is limited!
Chip in FORE Kids
At the 5th Annual Patrick Carr Memorial Golf Tournament presented by Brighton Securities and ASP Industries!
Monday, July 20, 2020 at Deerfield Country Club
$150/person ($600/foursome) Space is limited!
To learn more, click below!
Thank you:
Who knew that there was so much talent?!
C.U.R.E. wants to send a big THANK YOU to Lucky Heart Designs and Climbing Vines Westside for the WONDERFUL Parents’ Night Out! Everyone had a great time and created some pretty amazing things!
Be sure to check them both our on Facebook! Lucky Heart Designs offers fun painting parties and painting take home kits! Climbing Vines Westside has a fun play area for kiddos and is also offering sensory bins for sale at this time.
Thank you to all who made Trivia Night 2020 our biggest yet!
Thank you to all of our teams who participated in what has been coined “the toughest trivia night ever!” Congratulations to team NRG for taking home the title of smartest team 2020! All your generous donations and gestures of support will help us continue embracing families at every turn…
THANK YOU!
A special thank you to our friends that supported our impromptu Weekend Web-A-Thon on Facebook! Thank you so much for supporting us from the comforts of home, during this time of social distance! We raised over $5000 from our couches! Let’s keep the momentum going!
Rochester + C.U.R.E. = Support
Penny Drive News…
Upcoming Fundraisers
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 your support for C.U.R.E.! Rock them while you are working from home or out exercising. Great idea for families and teams participating in the C.U.R.E. Virtual 5K!
Exclusive
C.U.R.E. + Love Your Melon Beanies!
BIG NEWS!
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!
Speckled beanie AVAILABLE NOW!
Navy Cuffed beanie AVAILABLE NOW!
Navy beanie COMING SOON- PRE-ORDER TODAY!
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!
Awareness Coffee
Our friends at Awareness Coffee are helping to spread awareness about Pediatric Cancer with their coffee made from a specialty bean out of Peru, and roasted to perfection with subtle floral and chocolate notes.
A portion of proceeds will be donated to C.U.R.E., Golisano Children’s Hospital and Camp Good Days – your choice at checkout!
Buy the coffee here!
Mermaid Tail Headbands
Who doesn’t want to be a mermaid?
By purchasing your C.U.R.E. Mermaid Headband, you will provide one for a child going through cancer treatment and you get to keep one for yourself!
Headbands can be mailed to the purchaser!
KidCents Rite Aid Round Up Program
By rounding up, you are helping us to reach our goals by simply shopping at Rite Aid. Feel free to invite your friends and family to participate in the program. Imagine the change that your change can make!
See the steps to enroll here! for information on this fundraiser
Baby Boomer Baseball
Our friend, author Robert Kravetz, will be donating $10 for every book purchased to C.U.R.E.!
Want to check out this wonderful book full of stories and stats? Contact him today: rkravetz@brightonsecurities.com or sfasciano@brightonsecurities.com
Bereavement Corner:
April 1st meeting change:
Please join us for our bereavement group this month on Wednesday, April 1, 2020. We will be hosting group live via Skype from 7-8:30 pm. If you are interested in joining us, please download and set up Skype. 5 minutes before the group, you will receive an email with the link to sign in to the call. If you have any issues with obtaining Skype or joining the call, please contact our Parent Advocate, Kiersten Kunick on her cell and she can hopefully assist you. Her number is 585-697-4470.
My Pocket People
Thanks to a wonderful friend of C.U.R.E., we are able to take orders for these AMAZING support tools for our C.U.R.E. kids!
If you are interested in getting My Pocket People for your C.U.R.E. kid or sib,
please contact Adella at Adella.ivison@curekidscancer.com
We Want to Hear From You!
We are looking for volunteers for upcoming events in 2020!
If you are interested, please contact Adella at Adella.ivison@curekidscancer.com
We know it can hard to make ends meet in this uncertain time. We at C.U.R.E. want to help! Please contact the office if you would like to stop by and pick up a food bag. We have staples like peanut butter and jelly and mac and cheese that we hope you’ll find helpful!
Please call the office (585-473-0180) or e-mail adella.ivison@curekidscancer.com to set up a pick up time!
We are currently looking for interns for Fall 2020!!
If you are interested, please email adella.ivison@curekidscancer.com
Tell us your story.
Has C.U.R.E. helped you? We would love to hear stories about how C.U.R.E. has helped you and your family. These stories will be shared with grantors, donors, on our website and social media. We want the community to know their contributions are making a difference! Submissions can be sent to staff@curekidscancer.com.
What programming would you like to see at C.U.R.E.? We are working on developing more Parents’ Night Out events (where would you like us to set one up??) as well as joint programming with other local organizations. What would you like to see us work on? Please send suggestions to staff@curekidscancer.com
Young Professional Committee
Email Brittany Charles Gold in you are interested in learning more about C.U.R.E.’s new Young Professional Group!
charlebc11@gmail.com
Wish List 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.
Items Needed:
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
- 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
- Word searches, adult coloring books and crosswords
- Legos
We ask that all items be new and recently purchased. Thank you!
Support
Are you looking for someone to help tutor your child?
Are you looking for someone to help tutor your child? C.U.R.E. Childhood Cancer Association works with Boost to provide supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development. The group of teachers at Boost Tutors, will not supplement the tutoring being provided by the school, but will act as a “boost” to a child by helping him/her better understand material being presented at the child’s grade level. The tutors use their teaching expertise to fill the gap left when traditional schooling is not possible. The group is currently in need of volunteer tutors, also. For more information please contact Adella Ivison, Program Coordinator for C.U.R.E. at 585-473-0180 or Adella.ivison@curekidscancer.com and she will make a referral.
Educational Consultant Services from C.U.R.E.
Do you have questions and concerns about your child’s schooling after diagnosis of cancer, brain tumor or blood disorder? C.U.R.E. can help. Kathryn Wissler, M. Ed is available for educational consultation with Pediatric Hematology Oncology Patients seen at Golisano Children’s Hospital at Strong. If you would like to speak with Kathy Wissler either in person or via phone, please contact Adella Ivison, C.U.R.E. Program Coordinator, at 585-473-0180, or Adella.ivison@curekidscancer.com and she will make a referral. This service is provided free for C.U.R.E. families.
Mesothelioma Resource:
Mesothelioma.net has
a plethora of free resources and information for those suffering from
mesothelioma cancer and other asbestos diseases. Some of the topics we cover
are treatment options, financial assistance, and help for families of asbestos
victims. I’d also like to note that our site is Health On the Net certified as
a trustworthy source of medical information and is periodically reviewed by medical professionals.
If you are interested in more information regarding Mesothelioma, please visit Mesothelioma.net where they
provide free information and help to mesothelioma victims and their families.
Facebook Live
Kiersten Kunick and Michelle Magin, Parent Advocates, go live on Facebook.
They can answer any questions during this time, share upcoming news, provide support and connect parents with other parents.
Have a topic you’d like to hear about? Feel free to reach out to Kiersten at kiersten.kunick@curekidscancer.com or Michelle at Michelle.Magin@curekidscancer.com
They will do their best to answer your questions and address topics you’d like to hear about!
Brian Bisgrove Home of Courage
The Brian Bisgrove Home of Courage, located an hour away from Rochester, is a retreat and respite home for families with children who have life-altering conditions. Children and their families are invited into the beautiful, handsomely-appointed log cabin for a 3 or 4 day stay and rest and repose, all completely free of charge. At the Home, medically fragile children can experience a different kind of healing, one of the mind and the spirit. It’s a place to let go of anxiety and stress and focus on the family.
The website, with more detailed information on the Home and the application is: www.homeofcourage.com.