Welcome to the June 2020 Newsletter

Embrace The Fighters

As many of you are aware, Sunday, June 7th is “National Cancer Survivors Day”. While we typically kick off the month with our Survivors Day Picnic, we are doing things differently this year. This month, we are #EmbracingtheFighters. We read stories about our brave kids often. They are incredible! We will be doing various things this month to highlight the little fighters we have come to know and love over the years. We have a few Instagram Takeovers planned throughout the month (so be sure to follow us @curekidscancer_ !). We are beginning the month with something sweet - C.U.R.E. logo cookies for our friends at the hospital from Shelly’s Sweet Shoppe. We are honoring the fighters we have lost by planting flowers along our brick walkway in the Julie Roberts Children’s Memorial Garden. The pandemic forced us to cancel our Survivors Day Picnic, which we were truly heartbroken about. So we decided to switch gears and be innovative. We are SO THRILLED to share that we WILL indeed be celebrating this year with our first ever DRIVE THRU SURVIVOR CELEBRATION on Saturday, June 27th! Scroll down for more info - we are in need of volunteers & will need our families to RSVP immediately. We are so excited we will still get the chance to see you all, even if it is from a safe physical distance.
We hope you’ll join us this month as we #EmbraceTheFighters. Who are some of the fighters you admire? We’d love to hear!
Hope you are all hanging in there. The whole C.U.R.E. Staff & Board of Directors send our love.

Our heartfelt condolences to:
the family of Savion - 5/25/2020

Spotlight on: Autumn

A little about our friend…

Autumn was diagnosed Ewing’s Sarcoma in December last year. A tumor was found in her leg and treatment was started. She didn’t let that stop her, she has an amazing attitude for a 7 year old! Autumn is all smiles even during her stays in the hospital and packs her own suitcase of what she wants to bring for each stay. Item included are usually LOL dolls, her tablet with headphones, and some arts and crafts. She even does school work and in February was able to write Valentine’s cards for her friends at school, which is something she was excited about.
When Autumn is not at the hospital she loves to be outside. One of her favorite activities is camping. She was very excited to finally be able to go on a family camping trip last week after an unexpected hospital stay. She also likes to watch movies with her siblings. Everyone who cares for Autumn says they love her bubbly personality and enjoy hearing about what she is excited to do next

Survivors Day (Drive-Thru) Celebration- Join us!

Survivors Day FB (6).png — Drive-Thru & feel the love…

We just could not imagine a year without celebrating our incredible survivors! Nothing, not even a global pandemic will stop us in the pursuits to host our annual Survivors Day Celebration 2020. Date and location are a bit different this year, but we have a unique shindig for you! Located at the Marketplace Mall parking lot, this drive through experience will leave our families feeling celebrated and loved!
**We cannot do all this without our amazing volunteers! Please be on the lookout for volunteering sign-up emails!**

FREE dinner for C.U.R.E. Families Raffle in June!

CURE CARES FB INTRO.png — Weekly Raffle for FREE dinner for a C.U.R.E. Family to #EmbraceTheFighters

Every week during the month of June, we are #EmbracingTheFighters in many fun ways. Thanks to a generous donation from our friends at the Rochester Knighthawks, we are hosting a weekly raffle on Facebook for our C.U.R.E. Families to WIN a dinner from the local restaurant of their choosing up to $100. This contest is open to ALL C.U.R.E. Families (past, present & bereaved). How to play:
(1) Look out for our posts on Wednesday mornings each week.
(2) “Like”, Comment & Share the post to be entered into the contest.
(3) Tune in to a weekly Facebook Live at 3PM on Thursday to find out if you’ve won!
* We will contact the winner on Thursday after the drawing and the winner has five days to use their prize. Orders will be coordinated with the C.U.R.E. Staff and delivered to your house! You MUST order from a local restaurant, though, as we are doing our part to help the restaurant industry locally. We would LOVE if you shared a photo of you and your family with the meal so we can thank the Rochester Knighthawks & shout out to the local restaurant on social media! We hope you’ll play!

C.U.R.E Volunteer Appreciation Awards 2020

The recent COVID-19 pandemic may have sidelined many plans, but what a pandemic CANNOT do is keep us from recognizing our incredible volunteers. A pandemic CANNOT stop us from acknowledging the amazing individuals who give their time and talents to our organization with the hope of being helpful to our families. As a small office, we could not provide the support we provide without the love and effort of all of you around us. While we would love to recognize each and every one of you who contributes to make C.U.R.E. Childhood Cancer Association so special, we are focusing on a few for special awards this year. Please read below to learn about some pretty amazing friends we have.

Many of our C.U.R.E. families who are in the hospital may not have daily face to face contact with our Outstanding Strong Partner, but they do benefit daily from her commitment to their well-being. This person makes sure our 7N nurses are cared for, that they are current in their training and that the team runs like clockwork. She is also meticulous in making sure the unit is clean and in working order. As of May 18th, the unit is currently 1616 days CLABSI free! That’s over 4 years!! While that doesn’t mean much to the lay person, it certainly does in the medical community.

What does CLABSI mean? It means Central Line - associated Bloodstream Infection. And it means there have been that many days without a central line infection occurring on their unit. Why is that a good thing? Because a central line infection can cause a patient to remain in the hospital for longer and no one wants that. The 7N unit has been recognized in the hospital for its procedures and other units have mimicked the procedures that her staff have put into place. Another thing about 7N is its cleanliness. With children who are immune compromised, they are at greater risk of infection. This person is regularly assessing the cleanliness of the unit and as a result, the nurses, techs and cleaning staff are well aware of her exact standards, making it a point of pride on the unit.

This person has worked as a nurse for over 39 years at Strong. She began as a nurse in the NICU, became a CRN (Certified Registered Nurse) and then the Nurse Manager of 4-3600 and now 7N since the move of the unit to the Children’s hospital.

She has been so supportive of C.U.R.E. and our mission to help families. She has been a great resource for us as well. She has helped us coordinate dinner for the nurses and our families. She has assisted with donations to the hospital for use by the families. She advocates for the needs of our families as well. She is always concerned about the well-being and mental health of not only our families but of her staff as well.

During the pandemic, she has had to manage and adhere to new policies and how it affects our families. To say that it has been difficult has been an understatement. Balancing policies with parents’ wishes has been strenuous but she has worked to make families feel heard. She also called us to check and make sure that we were able to continue to provide support for our families, even though we can’t physically be in the hospital, knowing that C.U.R.E. is an important part of the care and well-being of our families.

In addition, she has assisted C.U.R.E. with the End of Chemo Bell ringings, often contacting the doctors to make sure they can attend, encouraging her nurses to attend and staying on the unit so they can be a part of the celebration and still maintain the safety of the patients.

To say that she does her job well is really not enough. She does her job with compassion and care and this is why C.U.R.E. would like to recognize Trish LaLonde as our Outstanding Strong Partner Award winner for 2020.

When you hear the words “Your child has cancer”, it changes you. You become a part of a community you never wish you were ever a part of. Unfortunately, there is a sub-set to that community that is unimaginable, yet these families have to deal with on a daily basis. The loss of a child to cancer is beyond the realm of imagination for most, but for some it is their reality.

This family had to say goodbye to their son and brother far too early in his young life. But what his family chose to do in the wake of their tragedy is truly awe-inspiring. They give back. They volunteer. They support others. They care. It is these actions that gives us the great honor of recognizing Deb Zalar and her family as the recipients of the 2020 C.U.R.E. Dedicated Family Award.

Deb’s son Buddy was diagnosed with Rhabdosarcoma on June 1, 2015 at the age of 18, just 4 days shy of his 19th birthday. To say this was a blow to the family is an understatement. This normally strong, healthy wrestler with a huge smile on his face was given an unimaginable diagnosis. Throughout his treatments, Buddy remained upbeat and positive. He even rang the End of Chemo Bell once he completed his treatments. But it wasn’t long after that he received the news that his cancer was back. On November 15, 2016, Warren “Buddy” Oderkirk passed away at his mother’s house. He was 19 years old.

Since that time, Deb has made it her mission to “do what Buddy would do” and has lived her life by that mantra. Deb, her sister, her daughters and friends and family have sponsored families at the holidays and have collected donations of items for C.U.R.E. to support our families. They have volunteered at many of our events, all the while, living up to the standard that Buddy set for himself; to stay positive and to do for others. Deb is also one of the parents who helps run our Bereavement Group so that she can be there for others who have to face the unimaginable loss of their child.

It is through Deb that her son continues to live on in his ideals and we are so incredibly blessed to call Deb and her family C.U.R.E. Supporters. Thank you, Deb and your whole crew, for all you do for us and for our families!

Back in 2015, C.U.R.E. had an idea to create a “Young Professional” group that could support and advocate for the organization and, more importantly, for our families. After much deliberation, many conversations, revisions to group structure and a final conclusion of how the group would work, the “C.U.R.E. YPC” was born. This committee was designed as outreach to young professionals in our community, giving them an opportunity to get involved with our organization at a higher level than volunteering every now and again. Getting this group up and running had its ups and downs, but there is definitely one person who has been the heart and soul of the execution. When C.U.R.E. needs volunteers, this person is always first to offer her time and efforts. She’s attended countless events volunteering for our organization. Her enthusiasm and passion for helping others is readily evident anytime you chat with her. It seems as though anytime we are in need of support, she is there ready and willing to lend a hand. When we needed volunteers to wrap gifts for our families at the holidays, she was there. When we were planning the annual Tacky Sweater Event, she was there willing to plan the entire event. This volunteer also worked diligently as a point person to create content, flyers and even recruit individuals to attend. At the actual Tacky Sweater event, she was instrumental in our Giving Tree ornament sales, encouraging our guests to come to our tree and purchase and ornament. Her caring attitude shined through during a brief period when C.U.R.E. had no Bookkeeper. She volunteered her time to come to the office and perform tasks that the Bookkeeper would normally perform in an effort to alleviate staff, who were already overwhelmed with tasks. Her big heart continues to show as she engages with the YPC leadership, which she recruited and maintains, is an active Board Member on our Board of Directors and volunteer at any event she can. While she joined the Board in 2018, she really started to display leadership qualities and her “all in” attitude within the past year. It is our great pleasure to award Brittany Gold with the Rookie of the Year 2020 Award.

As an organization, we establish partnerships with various companies, people and groups - whether it is to promote and host events, increase awareness or generate advocacy for our organization and families. We have had the privilege of partnering with our 2020 Outstanding Community Partner for a number of years. This partner, in particular, clearly has the best interest of us (and their other partners) in mind. While the organization as a whole leads with integrity, compassion and care, we have found that the employees involved in the organization also adhere to these same principles and go above and beyond for our community. It has been nothing short of a pleasure working alongside this group and their individual employees for the past several years. We were approached by one of their employees a few years ago to create an awareness opportunity that would help shine a light on both childhood cancer and our organization. This opportunity grew year over year, creating even more awareness of childhood cancer and more funds for us to continue our mission of helping local families. Back in March at the beginning of the change to the world as we knew it, we had several conversations with this group with the hope of continuing an event we were looking forward to. The goal of the Cradle for a CURE game was to, of course generate funds to continue our mission, but this year we were looking forward to highlighting our C.U.R.E. kids more exclusively. The team at the Rochester Knighthawks worked with us to brainstorm different opportunities for our kids to be involved in the game – expanding what our kids would be able to do, which was an enhancement to the game, but also took a great deal of work on their part. Once we learned that our Cradle for a CURE event would be canceled, the team from the Rochester Knighthawks made it their mission to have continuous conversations with us to assess and determine needs we may have to help navigate the pandemic. At one point, we learned that one of our families was in need of gloves to assist with the care of their child. We reached out to our friends at the Rochester Knighthawks and had many boxes of gloves delivered within 48 hours that were made available to this C.U.R.E. family. As conversations with this group continued, they determined they would like to support tour organization further. Several players from the Rochester Knighthawks took time out of their day to create promotional videos for our 5k and Fun Walk. Additionally, several employees from the group took it upon themselves to register for the 5k AND participate in our social media promotions that day. Just when we thought the support from the Rochester Knighthawks couldn’t be better, they contacted us with a grant opportunity. They very generously donated $5,000 to our organization. Pegula Sports & Entertainment is committed to our community. We will be utilizing a portion of those funds to directly support families AND local restaurants next month in recognition of C.U.R.E. Cares Month. It is our great honor and pleasure to recognize the Rochester Knighthawks and their teams as our 2020 Outstanding Community Partner.

We are staying connected!

ZOOM into connections with us!

We have put together another fun schedule for June! Interested in joining in? Send our Parent Advocates a note! Kiersten or Michelle.

Attention Families_.jpg — 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 Holly an email if you are in need: Click me to email.

New (7).jpg — 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.
**NEW BLOG POST COMING SOON ON MAY 15TH - STAY TUNED!**
(4) Contact our Parent Advocates about doing a Facebook Live or Instagram Takeover
(5) “Like”, Share or comment on our posts on social media!

Attention Families_ (1).jpg — 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.png — 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.

Upcoming Fundraising Events:

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. 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!).

Click me to sign up

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.

Click me to shop!!

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!

Get started here

New Template - CURE.png — 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!

buy washes. help local families.

Get your C.U.R.E. Gear

CURE CREW ELITE SPORT SOCKS May rebrand.png — 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!

Are you ready to rock?

LYM Rebrand.png — 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!

I need a beanie!

Bereavement Corner

MEDICAID RESOURCES_ (2).jpg — June meeting via Zoom

Please join us for our bereavement group this month on Wednesday, June 3, 2020. We will be hosting group live via Zoom from 7-8:30 pm. Kiersten Kunick, C.U.R.E.’s Parent Advocate, will be sending out a Zoom Link to our bereaved parents to join the meeting. If you have any issues, please contact Kiersten on her cell and she can hopefully assist you. Her number is 585-697-4470.

For bereaved Fathers on Father’s Day…
An excerpt from The Life I Didn’t Choose.

I can’t pretend to understand exactly what it feels like to be a father who buries a child. I’ve only been able to watch from the outside as my husband absorbed the impact of that great wound.

But I can tell you this: for dads, like moms, each holiday is another mile marker on the road of grief.

It is another poignant reminder that things are not as they were-they are not as they should be.

Many men keep the hurt bottled up inside, don’t talk about it, don’t seek out fellow bereaved fathers, and don’t cry as much as their wives.

It is easy to forget and overlook the ongoing pain of child loss for fathers-especially when outward signs are few.

But I promise you-that dad in the pew on Sunday-he’s hurting.

That man shaking hands and joking-he remembers.

He hasn’t forgotten that one of the special people that called him “Daddy” is no longer around to do it.

Tell him you remember too.

Speak his child’s name and share a special memory.

Acknowledge the pain. Let him express his grief.

And honor him as a father to ALL his children-those that walk the earth with him and those that don’t.

Wishlist

Copy of We are in this together. (2).jpg

June 2020 Newsletter