CURE Childhood Cancer Association

August Newsletter

CURE main logo pic

September is childhood cancer awareness month AND sickle cell disease awareness month!

What are you doing during September to raise awareness? We want to know!
We want to see a sea of gold and red during September. Share with us what you are doing to raise awareness. We will share on our social media platforms!
Here are some ideas on how YOU can easily help us raise awareness:

(1) Light up gold (pediatric cancer awareness) or red (sickle cell awareness)! Local stores sell yellow and red light bulbs. Change the light on your front porch to show your support. You can even purchase lights online using AmazonSmile and help CURE at the same time. Childhood Cancer Awareness Lights    Sickle Cell Awareness Lights
(2) Ask your local library, school or fire department to include that September is Childhood Cancer or Sickle Cell Awareness Month on their digital signs in front of their building for the month.
(3) Ask your school’s Athletic Director or Youth League Coordinator to paint a gold or red ribbon on the playing field! Teams can also host awareness games. Chat with the CURE staff on how we can make that happen and how we can help!
(4) Ask a local restaurant or bar to host a “Gold Party” or “Red Party” – Guests wear the color of awareness, drink and food specials centered around the awareness color.
(5) Wear a gold or red tie, ribbon or accessory throughout the month. Take a selfie and post on social media. Tag CURE and use the hashtag #GoldforCUREKids or #RedforCUREkids
(6) “Give awareness a hand” – Submit your handprint in either gold or red paint on paper to CURE (200 Westfall Road, Rochester, NY 14620) and include a brief description of why you think it’s important to raise awareness. These handprints will be on display at the CURE office during the month of September (So send your handprint in before the end of August to be included!!) PLEASE DO NOT INCLUDE NAMES ON THESE!!
(7) Host a bake sale at your place of work, noting that it’s to raise awareness (“Life without pediatric cancer/sickle cell disease would be sweet. Enjoy a treat and help us raise awareness!”) and donate the proceeds to CURE. The CURE Staff would be more than happy to help provide baked goods (as long as we have a little notice  ).
(8) Host a jeans day at your workplace where employees pay to wear jeans. Encourage them to wear the color of the awareness ribbon you are working towards. Donate the proceeds to CURE.
(9) Tie gold or red ribbons around your house, office, mail boxes, place of work, etc. to raise awareness.
(10) Sell paper awareness ribbons to patrons at your place of work. They write their names on them and a message of hope. Proceeds can be donated to CURE. We can work with you and provide the ribbons to be written on.
(11) Stop by the CURE office (200 Westfall Road). We will have gold and red ribbons you can wear during the month.
(12) We will be selling our lawn signs again, one for childhood cancer awareness month and one for sickle cell awareness month. These will be on a first-come, first-served basis. Once we run out, we are out. Pick up will be at the CURE office the week of August 28th. Reserve your sign online here: https://curecca.ejoinme.org/cureawareness
(13) Help us with the Inaugural “Liquid Gold for CURE” challenge! Area restaurants will feature a SPECIAL mac and cheese dish for the month of September – because mac and cheese is DEFINITELY the most kid-friendly (and adult-friendly!), delicious food we can think of! Even better? It’s gold! We will feature the restaurants leading up to September and at the beginning of the month. Be sure to check them out and try their dishes! Every week, the number of special dishes ordered will be tallied and the winners get a TROPHY and a VIP table to the 10th Annual Recipe for a CURE Sunday brunch on October 14th! Interested in participating? Reach out to Holly (holly.dutcher@curekidscancer.com).

Now that we’ve given some ideas, the creative and fun part starts! If you get your business involved in awareness and send us photos, we will promote on social media and in a special EXTRA edition of our newsletter in mid-October. We will tag your business on social media so everyone can see how you are making a difference in the community and partnering with our families!

Phew…that’s A LOT of options! We CAN’T WAIT to see how you are going to let our families know they are not alone!!! Are you as excited as us?! Tell us how you plan to “Paint the town Gold” or “Paint the town Red” ahead of time!

Spotlight On Zuriel

“Hi, I’m Zuriel! About a year ago I was diagnosed with nephroblastoma, a type of kidney cancer common in children. I made it through treatment of chemotherapy, surgery, and radiation with no delays and finished six months later, cancer-free! I credit this to wonderful doctors and nurses, the prayers of many people, and the support of CURE and similar organizations. CURE has made a huge impact on our family, and we are thankful for the support that they have provided.

I enjoy reading, hanging out with friends and family, listening to music, and playing the piano and harp. Cancer has not stopped me from doing any of these things. Cancer has changed my life, but it hasn’t stopped me from living.” 

The Summer Interns

Hi, my name is Giannette Kokkoris (left) and I am currently a sophomore at William & Mary. I am studying Public Policy with a minor in Public Health and hope to one day become a doctor.  CURE provided many of their services to my family when I was younger, and I thought that interning would be a great way to give back and help families that are facing similar situations as mine did. I am so thankful for this opportunity and cannot wait to work with the team here!

Hi! My name is Ella Rickett (right) and I’m a senior at Keuka College, currently working on earning my degree in Child and Family Studies. Each year, I have to complete an internship of 140 hours, and decided that I wanted to look into nonprofit organizations… so here I am! I am super excited that I was able to find CURE and now I am ready to learn about what happens “behind the scenes” and partake in different events. Even though I have only been here a few days, I can tell that this organization plays a big role within the Rochester community and I’m so fortunate to have the opportunity to be a part of it!

Free CURE Programming and Events

Save the date and join us Saturday September 22nd for our annual Morton Family Fun Day!! This is a free event for CURE families!


It’s game time! For a CURE Parents Night Out that is and what better time to watch some baseball than a summer night?!

Join us Tuesday August 7th at Frontier Field as the Rochester Red Wings take on the Toledo Mud Hens! Game time is at 7:05 pm. CURE will provide tickets for each couple as well as a $15 food allowance. This event is for adults only so either 2 parents or caretakers of a CURE child are welcome! Andrea will arrive at 6:00 pm so we would like to encourage couples if you are able, to come before the game and mingle a little bit.

Please reach out to RSVP by August 1st to andrea.shaffer@curekidscancer.com or call the office at 585-473-0180.  We are looking forward to spending some time with our CURE parents!

SAVE the DATE

Roc City Sicklers 3rd Annual Family Picnic

September 29th, 2018

12:00-4:00pm

Gates Chili Lodge

1489 Howard Road

(Howard Road near Walmart)

Rochester, NY 14606

RAIN or SHINE

RSVP by 9/1/2018

sickle.rochester@gmail.com

585-275-0798

Save the date for Survivors Night
Join UR Medicine’s Wilmot Cancer Institute and the Rochester Red Wings on Friday August 10th. Gates open at 6 p.m. Fireworks will follow the game. Tickets cost $4 each and include a Wilmot Warrior Walk T-shirt! All survivors, caregivers, families and friends are invited to join for the Survivors Parade on center field for the National Anthem. If you’d like to participate in this portion of the event, please arrive to the ballpark by 6:15 p.m. To order tickets, contact Katy Hanrahan at (585) 455-8591 or email mkphanrahan@gmail.com. Presented By Wilmot Cancer Institute 

 


Attention CURE families! Stop in the office before you head back to school and pick up backpacks filled with back to school essentials!!

Thank you for your support!

Thomas Manno, a recent McQuaid graduate, held a fundraiser for our CURE families in loving memory of both his uncle and his father, who have passed away from Leukemia. He chose to work with CURE for his senior Capstone Project and was able to raise over $1,000!! We are so thankful for friends like Thomas who are supportive of CURE’s mission and for his passion in wanting to help local families who are affected by childhood cancer

In the last few months we have received a lot of very generous donations through the donation option on our Facebook page! Whether you have done this for a birthday, anniversary, or just to support a good cause, we want to say THANK YOU and we appreciate you!!! It has not gone unnoticed and from all of us here at CURE, we are extremely grateful for you!

One of our CURE kiddos, Sadie, stopped in last week on her 9th birthday to drop off a homemade project she has been working on for other CURE kids that are in treatment. Inside each bright and fun patterned bag that she made, she inserted a comfy blanket and a canvas she painted herself, each with a different and inspiring quote. Sadie, we are so thankful for you and think you are awesome!!

Thank you so much to everyone who came out for our 3rd Annual Patrick Carr Memorial Golf Tournament!! We had another sold out year and the rain held off for us! We truly appreciate everyone’s support, and were able to raise over $16,000 to help CURE families! We cannot thank our friends at Brighton Securities enough for again agreeing to be the event’s presenting sponsor.

Upcoming Fundraisers


We have a BIG project idea for the month of September and could use your help!
Contact us by August 17th to learn more!


Are you ready for a WILD time?!
The 10th Annual Recipe for a CURE Sunday Brunch, featuring the BEST chefs in Rochester and the FIERCEST CURE kids around, is sure to be a hit!
We are actively searching for the PERFECT partners for this event:
– Sponsors
– Silent Auction packages
– Live Auction stunners!
Do YOU think you have what it takes to help make the 10th Annual event the best ever?!
Check out our website for more info:
https://curecca.ejoinme.org/Brunch2018


How creative are you?!

Gather your friends, your neighbors, your family, your co-workers…We have a CHALLENGE for you!
Think you have what it takes to put together the BEST baskets for a silent auction? Let’s see!
Put together a themed basket for us to auction off at our event and make a difference to local families facing BIG battles!
Some theme ideas:
– Movie Night
– Date Night
– Moscow Mule
– Margarita
– Italian Night
– Mexican Night
– Girls Day In
– Sports
– Princess
– Legos
– Family Breakfast
– Pet Care
– Handyman
– Car enthusiast
– Baking
– Fishing
– Coffee Lovers

*PHEW* We’re pooped. What other ideas do you have?! We can’t wait to see!
Baskets can be delivered to the CURE office Monday through Friday 9 AM – 5 PM through September 28th.
Need us to pick it up? Give us a call! (585-473-0180)
Thanks for helping us make this the BEST event yet!



To donate online visit: curekidscancer.com/donate

With summertime starting we often have kids do lemonade stands for CURE. If you are planning on having one, let us know so we can stop by! We want to show our appreciation – plus we love lemonade and snacks!

Save the date! We will be holding another Peach Skin Sheets fundraiser in October! You get great quality sheets at a discounted price while helping out local families! What’s not to love?

Our friends at Embrace the Difference have a wide selection of beautiful pieces with one sure to be perfect for the Mother in your life! Be sure to check them out. CURE will receive a donation for your purchase, just be sure to let them know you support us!

BIG NEWS!! Six Delta Sonic locations have been added to the list of participating car washes!! If you get your car washed at the Classy Chassy, Laser Wash or Delta Sonic, prepurchase your car washes here and help support local families all at the same time!

Click here to purchase!

Gabriella Hunt is a storytelling photographer. Her style is a combination of documentary and photojournalistic approaches. Gabriella Hunt Photographer services the Western NY area, predominately Rochester, NY and surrounding areas.  She specializes in births, newborns, and family sessions. She offers free sessions to those battling or who have battled cancer.

You can contact her at gabihuntphoto@gmail.com

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 CURE, Golisano Children’s Hospital and Camp Good Days – your choice at checkout!

Buy the coffee here!

On Saturday, August 18th, 2018 from 11:00a.m. – 2:00p.m., Faith Temple will host our 7th annual “THE BIG GIVE“. This is a community event where various items such as new/gently used clothes for adults, youth/children, non-perishable food, household items, toys, baby items, and more are given away FREE to those who attend. Each child in attendance will receive a new book bag with school supplies, while supplies last.This year The Big Give will be sponsored by MVP Healthcare. You can find all info here.


We are excited to announce that we have partnered with Rite Aid and are now an official KidCents charity! KidCents is a program created by The Rite Aid Foundation that allows Rite Aid customers to round up their purchases to the nearest dollar and donate their change to help support kid-focused charities.

Here’s how you can enroll in the KidCents program and round-up to our charity:

Step 1: Enroll in wellness+ with Plenti (Skip to Step 2 if you are already a wellness+ with Plenti member)

  • Visit KidCents.com and click ‘Sign In’ on the left
  • Click the box on the right to ‘Enroll in wellness+ with Plenti
  • Complete registration process for wellness+ with Plenti
  • Click through to finish signing up in Plenti
  • When finished with both processes, you will be directed to RiteAid.com

Step 2: Enroll in the KidCents Round-Up Program

  • Visit KidCents.com
  • You should see your account logged in on the left. If not, sign in with the account information.
  • Click ‘Start rounding up today!’ dial on the left

Step 3: Designate Your Charity

  • Click ‘Select a Charity’ on the left
  • Type [INSERT CHARITY NAME HERE] and click ‘Select This Charity’

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!


We Want To Hear From You!

Join Our Team!

We are currently looking for interns for Fall ’18!

If you are interested, please email andrea.shaffer@curekidscancer.com or sam.corrigan@curekidscancer.com

What new programming would you like to see at CURE? 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 Andrea.Shaffer@curekidscancer.com

We are always looking to add more volunteers to our volunteer base at CURE! If you want to help local families by becoming a CURE volunteer, you can sign up here or you can email andrea.shaffer@curekidscancer.com to find out about upcoming volunteer opportunities!


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 CURE’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!
  • Travel sized toiletries: Deodorant, toothpaste, toothbrushes (singular), shampoo and conditioner
  • Wicker or plastic baskets
  • Small pocket/purse-sized calendars
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Paper towels and toilet paper
  • Items for teens or young adults
  • Toys for kids under 5 years old

We ask that all items be new and recently purchased.  Thank you!


Bereaved Families Corner 

7 Things I’ve Learned Since the Loss of My Child

By Angela Miller

Child loss is a loss like no other. One often misunderstood by many. If you love a bereaved parent or know someone who does, remember that even his or her “good” days are harder than you could ever imagine. Compassion and love, not advice, are needed. If you’d like an inside look into why the loss of a child is a grief that lasts a lifetime, here is what I’ve learned in my seven years of trekking through the unimaginable.

1). Love never dies.

There will never come a day, hour, minute or second I stop loving or thinking about my son. Just as parents of living children unconditionally love their children always and forever, so do bereaved parents. I want to say and hear his name just the same as non-bereaved parents do. I want to speak about my deceased child as normally and naturally as you speak of your living ones.

I love my child just as much as you love yours– the only difference is mine lives in heaven and talking about about him is unfortunately quite taboo in our culture. I hope to change that. Our culture isn’t so great about hearing about children gone too soon, but that doesn’t stop me from saying my son’s name and sharing his love and light everywhere I go. Just because it might make you uncomfortable, doesn’t make him matter any less. My son’s life was cut irreversibly short, but his love lives on forever. And ever.

2). Bereaved parents share an unspeakable bond.

In my seven years navigating the world as a bereaved parent, I am continually struck by the power of the bond between bereaved parents. Strangers become kindreds in mere seconds– a look, a glance, a knowing of the heart connects us, even if we’ve never met before. No matter our circumstances, who we are, or how different we are, there is no greater bond than the connection between parents who understand the agony of enduring the death of a child. It’s a pain we suffer for a lifetime, and unfortunately only those who have walked the path of child loss understand the depth and breadth of both the pain and the love we carry.

3). I will grieve for a lifetime.

Period. The end. There is no “moving on,” or “getting over it.” There is no bow, no fix, no solution to my heartache. There is no end to the ways I will grieve and for how long I will grieve. There is no glue for my broken heart, no exilir for my pain, no going back in time. For as long as I breathe, I will grieve and ache and love my son with all my heart and soul. There will never come a time where I won’t think about who my son would be, what he would look like, and how he would be woven perfectly into the tapestry of my family. I wish people could understand that grief lasts forever because love lasts forever; that the loss of a child is not one finite event, it is a continuous loss that unfolds minute by minute over the course of a lifetime. Every missed birthday, holiday, milestone– should-be back-to-school school years and graduations; weddings that will never be; grandchildren that should have been but will never be born– an entire generation of people are irrevocably altered forever.

This is why grief lasts forever. The ripple effect lasts forever. The bleeding never stops.

4). It’s a club I can never leave, but is filled with the most shining souls I’ve ever known.

This crappy club called child loss is a club I never wanted to join, and one I can never leave, yet is filled with some of the best people I’ve ever known. And yet we all wish we could jump ship– that we could have met another way– any other way but this. Alas, these shining souls are the most beautiful, compassionate, grounded, loving, movers, shakers and healers I have ever had the honor of knowing. They are life-changers, game-changers, relentless survivors and thrivers. Warrior moms and dads who redefine the word brave.

Every day loss parents move mountains in honor of their children gone too soon. They start movements, change laws, spearhead crusades of tireless activism. Why? In the hope that even just one parent could be spared from joining the club. If you’ve ever wondered who some of the greatest world changers are, hang out with a few bereaved parents and watch how they live, see what they do in a day, a week, a lifetime. Watch how they alchemize their grief into a force to be reckoned with, watch how they turn tragedy into transformation, loss into legacy.

Love is the most powerful force on earth, and the love between a bereaved parent and his/her child is a lifeforce to behold. Get to know a bereaved parent. You’ll be thankful you did.

5). The empty chair/room/space never becomes less empty.

Empty chair, empty room, empty space in every family picture. Empty, vacant, forever gone for this lifetime. Empty spaces that should be full, everywhere we go. There is and will always be a missing space in our lives, our families, a forever-hole-in-our-hearts. Time does not make the space less empty. Neither do platitudes, clichés or well-wishes for us to “move on,” or “stop dwelling,” from well intentioned friends or family. Nothing does. No matter how you look at it, empty is still empty. Missing is still missing. Gone is still gone. The problem is nothing can fill it. Minute after minute, hour after hour, day after day, month after month, year after heartbreaking year the empty space remains.

The empty space of our missing child(ren) lasts a lifetime. And so we rightfully miss them forever. Help us by holding the space of that truth for us.

6). No matter how long it’s been, holidays never become easier without my son.

Never, ever. Have you ever wondered why every holiday season is like torture for a bereaved parent? Even if it’s been 5, 10, or 25 years later? It’s because they really, truly are. Imagine if you had to live every holiday without one or more of your precious children. Imagine how that might feel for you. It would be easier to lose an arm, a leg or two– anything— than to live without your flesh and blood, without the beat of your heart. Almost anything would be easier than living without one of more of your precious children. That is why holidays are always and forever hard for bereaved parents. Don’t wonder why or even try to understand. Know you don’t have to understand in order to be a supportive presence. Consider supporting and loving some bereaved parents this holiday season. It will be the best gift you could ever give them.

7). Because I know deep sorrow, I also know unspeakable joy.

Though I will grieve the death of my son forever and then some, it does not mean my life is lacking happiness and joy. Quite the contrary, in fact, though it took awhile to get there. It is not either/or, it’s both/and. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve I also know a joy like no other. The joy I experience now is far deeper and more intense than the joy I experienced before my loss. Such is the alchemy of grief.

Because I’ve clawed my way from the depth of unimaginable pain, suffering and sorrow, again and again– when the joy comes, however and whenever it does– it is a joy that reverberates through every pore of my skin and every bone in my body. I feel all of it, deeply: the love, the grief, the joy, the pain. I embrace and thank every morsel of it. My life now is more rich and vibrant and full, not despite my loss, but because of it. In grief there are gifts, sometimes many. These gifts don’t in any way make it all “worth” it, but I am grateful beyond words for each and every gift that comes my way. I bow my head to each one and say thank you, thank you, thank you. Because there is nothing– and I mean absolutely nothing– I take for granted. Living life in this way gives me greater joy than I’ve ever known possible.

I have my son to thank for that. Being his mom is the best gift I’ve ever been given.

Even death can’t take that away.

You can find the full article here

Our most sincere condolences

Zoey Dagget – 7/4/2018

Tristan Wells – 7/7/2018

Nick Denardo – 7/24/2018

Support:

Bereavement Group:

illustration of the forget-me-not flowers over white background

The first Wednesday of each month

Hosted by Kiersten Kunick and Adella Ivison

200 Westfall Road, Rochester 14620

Due to the holiday the next meeting is July 11, 2018

From 7-830pm

No reservations required


ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

6-730pm

Free Parking

Food provided by Wegmans


Are you looking for someone to help tutor your child? Boost provides supplementary tutoring for children with cancer and other chronic diseases, which may prevent normal educational development. This group of teachers 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. Our 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. For more information please go to www.boost4kids.com or contact Linda Bolan at 585-317-7269.

Educational Consultant Services from CURE

Do you have questions and concerns about your child’s schooling after diagnosis of cancer, brain tumor or blood disorder? CURE 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 Kiersten Kunick , CURE Parent Advocate, at 585-697-4470, or call the CURE office at 585-473-0180 and she will make a referral. This service is provided free for CURE families.

Outpatient/On treatment Support Group:

Kiersten Kunick will host an Outpatient/On treatment Support Group for parents at the CURE office once per month.

This meeting will be held from 12pm – 1pm on the 2nd Wednesday of every month.

Join us and connect with other outpatient caregivers!

Feel free to reach out to Kiersten kiersten.kunick@curekidscancer.com

Long-term Survivor Support Group:

Adella Ivison will host a Long-term Survivorship Support Group for caregivers at the CURE office once per month.

This meeting will be held from 6:30pm – 8pm on the 4th Wednesday of every month.

Join us and connect with others about late effects and more.

Feel free to contact Adella at adella.ivison@curekidscancer.com

Facebook Live:

Kiersten Kunick and Adella Ivison, 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 kiersten.kunick@curekidscancder.com or Adella adella.ivison@curekidscancer.com and share!

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 of rest and repose, all comepletely free of charge.  At the Home medically fragile childere can experience a different kind of healing, one of the mind and spirit.  Its 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.