CURE Childhood Cancer Association

February Newsletter

CURE main logo pic

A Message from the Executive Director

Well, Friends…it seems as though there’s no escaping winter. It’s here. The darker, shorter days are here. The grayness surrounding us outside. Bare trees. Lots of mud and dead grass (because we really haven’t gotten too much snow this winter). Cold temperatures. The gang is all here. I find myself longing for the warmth and sunshine. When I find myself lost in thought or grumpy being cold, I feel I need something to look forward to – to brighten my day and remind me spring is coming. Right now, I am looking forward to CURE’s 8th Annual 5k and Fun Walk. Our friends at The Cornerstone Group of Wells Fargo Advisors have been kind enough to contribute and be our presenting sponsors once again. Kim has been working diligently on putting together a fantastic event for our participants. We’ve made the entrance fee to participate the lowest it’s ever been. We hope you are looking forward to the event, too. Oftentimes, especially after the holidays, we hear back from our families about how thankful they are for CURE and the services we provide and find themselves wanting to give back to us. The 5k and Fun Walk is the PERFECT opportunity to do this. Form a team. Come out and enjoy beautiful Seneca Park. Our friends at The Seneca Park Zoo are offering one free child admission with the purchase of an adult admission to our participants for the day so you can extend your day of fun and togetherness and continue to make memories throughout the day. Of course this is an important event for CURE because it is one of our three main fundraisers that brings donations to the organization, enabling us to provide necessary services our families depend on, but I know the office staff truly look forward to this day. We do not have the opportunity to interact with all of you as much as we would like to. We are here in our jobs because we want to help you through your toughest days, celebrate your greatest days and offer a hug when you need it. We LOVE what we do. Events like the 5k and Fun Walk enable us to interact with you, catch up with you, see your families…That being said, I’d like to invite all of you to the event this year, taking place on Saturday, April 29th. Come say hi to the staff and Board members from CURE. Participate in the Team t-shirt design contest. Celebrate the coming of spring, the coming of sunshine, the coming of a new day.

Added bonus? If you sign up by Sunday, February 5th at noon, you will have the chance to have your name added to a football squares contest where you could win an itunes gift card, Yotality gift card or Wegman’s gift card. Music. Yogurt. Food? I’m in.

Until next time, I’m going to keep looking forward to that sunshine.

Spotlight On Emilia

Emilia was diagnosed with Acute Lymphoblastic Leukemia on July 15, 2016 at the age of 2 1/2. She spent much of her summer in the hospital admiring the flowers and sunshine from her hospital window. Once home, her schedule has been filled with clinic appointments, blood work, and chemotherapy. She is always asking questions and loves learning about all of her treatments. She finds the vibrant colored chemo very exciting! She’s always looking on the bright side of things. She is finally approaching the end of the front-line of treatment and her family is looking forward to long term maintenance. She will continue with treatment for approximately the next 2 years.

Emilia has always been a free spirited, fun loving and active girl. Beyond the sporadic loss of energy, her free spirit and positive attitude has always remained. She enjoys spending her time playing with friends, soccer, playing dolls, hide and seek, and dancing.  She also loves swimming and being outside. Her silly faces and goofy personality are always shining through. She is truly a sweet and thoughtful girl. Emilia has rolled with everything A.L.L. has thrown at her, and never skipped a beat.


Bell Ringing!!

Congratulations Molly!!! 

On January 16th surrounded by her parents and brother, Molly rang  the bell of hope signifying her last chemo treatment at Golisano Children’s Hospital at Strong!


Congratulations Avery!!! 

On January 31st with her dad by her side, Avery rang  the bell of hope signifying her last chemo treatment at Golisano Children’s Hospital at Strong!


Focus of the Month

     

AJ’s Beer Warehouse Raffle

Thank you so much to our friends at AJ’s Beer Warehouse for donating $1,370 to CURE from a raffle they held at their store. Congratulations to Johnny who was the winner of the Ruby Street Brewing System, we hope you enjoy it! Be sure to check out AJ’s Beer Warehouse – a great store located at 175 Clay Rd in Henrietta. With all the variety they offer, there’s sure to be something you’ll like! Please join us in supporting those who support us!


Bears and Books Donation

We are so thankful for Jane Miller from Usborne books for donating 15 adorable cuddle bears and books! Jane collected donations from friends and family who made the donations in memory of loved ones. She also collected donations from Lattimore of Rush Henrietta Physical Therapy. We thank you all for your kindness and we know our CURE kids will just love these!


Painting with a Purpose Fundraiser 

A HUGE thank you to everyone who came out to Painting with a Twist on January 22nd. Your contributions raised $1,177 for CURE!! We would also like to thank Sweet Sensations Desserts​, The Melting Pot​, Qdoba​ and Mark’s Pizzeria ​for donating some delicious food for the event. Please take a look at the pictures to see how wonderful the paintings came out. We appreciate the understanding of our supporters who were unable to make it to this event. We sold out! We are looking forward to planning our next painting night so stay tuned (and don’t worry, we will have more space available next time!)!


Upcoming Events and Opportunities to Support:

8th Annual 5K and Fun Walk

Presented by The Cornerstone Group of Wells Fargo Advisors

OH THE THINGS YOU WILL SEE
IN LOWER SENECA PARK.

When: April 29, 2017

Where: Longhouse Shelter, Seneca Park

5k Run and Fun Walk kicks off at 9:30 AM

New for 2017!

Price for registration is $15.  This includes a CURE bracelet and CURE sunglasses.

Raise additional funds through donations and/or fundraising teams.  Your direct donation and those made to your fundraising page contribute to your level of reward*.

Raise: 
$30- receive a cotton t-shirt and CURE sunglasses 
$60- receive a tech t-shirt and CURE sunglasses 
$100- receive a hooded sweatshirt and CURE sunglasses

Register yourself and your team today by clicking here!

30th Annual Senior Select Hockey Game

Dedicated to the loving memory of William & Margeurite Quinlan.

CURE Childhood Cancer Association will be holding its 30th Annual Select Memorial Hockey Game, featuring Section V’s top senior players. These players will face off in two games on March 18th beginning at 5:30 PM and 7:30 PM at Thomas Creek Ice Arena. Purchase your tickets here!

Can’t make it to the game, but still want to help? YOU can make a difference through purchasing an ad for the program book for the game! Options include full, half, quarter and business card sized ads! If you are a past player and would like to give back make sure to purchase an ad in our throwback/memory section of the program. Purchase your ad here!

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You don’t want to miss out on this fun night of trivia! Purchase your tickets here!  

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Please read our latest blog post on why you should designate to CURE.
http://curekidscancer.com/the-united-way-campaign/

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We are currently looking for salons who are interested in partnering with CURE and participating in Cutting 4 A CURE which will be on June 11th. If your salon is interested and would like more information please email cutting4acure@gmail.com

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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!

Art Work Needed

We have a “Wall of Fame” at the Twelve Corners Starbucks that features artwork of our CURE kids. We would love to feature your work and the wall could use a little love. Please do not include last names on your pieces. They can be sent to the CURE office or given to Kiersten at the hospital.

Has CURE helped you? We would love to hear stories about how CURE 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 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 staff@curekidscancer.com

CURE Kids Corner

Join us for some fun over February Break! 

CURE kids and parents, are you looking for something to do over February break? Come join us at Gilda’s Club Rochester, NY on February 21st at 11:30 am and learn how to make meatballs and pasta sauce with Chef Dustin Muroski. This is a free event for CURE kids and parents. Please RSVP to staff@curekidscancer.com

Do you love to read books? Please come and join us on February 22nd from 9:30 am-6:30 pm for our bookfair and pick out some FREE new books to take home and read. We have books for pre-readers to high school level and everything in between. CURE received a very generous donation of over 6,000 new books from customers of Barnes and Noble.

This bookfair is for CURE families.


Bereaved Families Corner

8 REASONS WHY WINTER IS THE WORST (FOR GRIEVERS)

What’s cold, icy, really uncomfortable, and sometimes makes you sad? Gosh darn winter, that’s what. You can spare me your affinity for skiing, fresh fallen snow and curling up by a warm fire because I will swiftly counter with wet socks, slush, and lack of sunlight. Sure winter has its moments, but for some its short days and bone chilling temperatures are enough to push you over the edge. This may be especially true for many of you who have to suffer the indignities of winter while also trying to cope with your grief. Grief is an emotional tundra and then winter comes along and paints the landscape frigid and grey to match your mood. Winter can exacerbate the troubles grievers are already vulnerable to like isolation, depression and poor self-care. Perhaps I’m biased because I’ve been stuck inside the house with kids and a naughty puppy for 100 weeks, but I’m going take the next few minutes to espouse all the reasons why winter is the worst, especially for grievers.

  1. Lack of Sunlight: A lack of sunlight, or the length of the night in some cases, can cause an increase in melatonin and a drop in the neurotransmitter serotonin and Vitamin D. All of this can throw your mind and body out of whack and leave you feeling tired, irritable and blue. Tip: Do what you can to get outside, open the blinds, and hold on until daylight savings time.
  1. Cabin Fever: I’ve lived through winter in 3 out of 5 of 2015’s snowiest cities. And then I lived through winter in Maryland, where the slightest threat of ice or snow shuts everything down. Winter has debilitated Baltimoreans and we have spent a lot of time cooped up indoors….together…with little to do…indoors…lots of togetherness. Cabin fever is not a technical diagnosis but it is a well-documented phenomenon (think early US settlers who spent long winters alone in their cabins). Cabin fever describes a state of restlessness, depression and irritability brought on by spending time in a confined space or remote area. Where grief is concerned, being stuck inside provides you with ample time to spend ruminating, thinking of your loved one, focused on difficult emotions, and replaying unpleasant memories with little distraction. Tip: It’s okay to spend time focused on your grief, but also find constructive ways to occupy your mind like puzzles, movies, games, organizing, home repairs, calling a friend, creating art, or writing in your journal.
  1. Social Isolation: The predisposition for grievers to withdraw combined with cancelations, problems with transportation, and a desire to avoid the cold and snow can amplify your risk of falling into a cycle of emotional and social isolation. Isolation and loneliness can have a negative impact on your physical and emotional health. Tip: Get out and go to a mall, store, support group, or place of worship. When possible, push yourself to keep plans even if it means braving the cold.
  1. Not moving enough: You already know that even a small amount of exercise can have a marked impact on your physical and emotional health. Obviously in winter your options for getting out and moving around are limited. Snowy roads, icy sidewalks, and the cold make it virtually impossible to find much opportunity for exercise. Tip: Even though taking an hour long walk outside might not be possible, look for alternative opportunities to get at least 20 minutes of exercise a day. Try walking outside for shorter intervals, get an exercise DVD, plan an indoor workout routine, or join a gym.
  1. Poor eating and weight gain: Thank goodness for bulky sweaters, am I right? Studies show that caloric intake tends to increase about 200 calories a day beginning in the fall. The rationale behind this increase is debatable as some researchers believe primitive impulses drive humans to stockpile calories in anticipation of short days and cold weather, while others think there’s just more opportunity to indulge in the winter (holidays, time spent inside, and the nostalgic connections associated with food). Regardless of why you eat, bad food and extra pounds can leave you feeling gross on many levels. Tip: Are you giving yourself permission to eat badly because you’re sad? Are you eating out of boredom? Are you eating certain foods because you associate them with the cold weather or holidays? Do you rationalize that you have time to work off the weight before beach season? Be careful and be mindful of what you’re eating and why.
  1. It’s cold: That’s all. Being cold is torture.
  2. You’re sad: For some, the holidays present a storm of grief triggers followed by months of feeling blah (see all of the above). It’s possible that the events of November and December have set you adrift on a long grief wave that won’t recede until the spring thaw. Tip: Believe that things will get better and check out our section on coping with grief.
  3. You’re SAD: Winter onset seasonal affective disorder (SAD) is a subtype of major depression that is characterized by symptoms that emerge in fall or early winter and recede during the spring. These symptoms may start out mild and become more severe and include things like irritability, tiredness or low energy, problems getting along with others, hypersensitivity to rejection, heavy feeling in the arms or legs, oversleeping, appetite changes (craving carbs), and weight gain. It goes without saying that SAD can complicate one’s ability to cope with grief and other hardship. Tip: If you think you might suffer from SAD read more about it here and talk to your doctor about your concerns.

www.whatsyourgrief.com

* This article was featured in the 2017 Winter Edition of the national newsletter of the Bereaved Parents of the USA


Our most sincere condolences…

Jim Archibald- January 6th

For our friend, Jim. Your passion for life, for your family, for music and for our CURE kids will never ever be forgotten. We send our most sincere condolences to Jim’s family and friends!


Support:

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.

ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

Next meeting is Febuary 21,2017

6-730pm

Free parking provided by CURE Childhood Cancer Association

Food provided by Wegmans


Bereavement Group:

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

The first Wednesday of each month

Hosted by bereaved parents, Jim & Andrea Spencer

200 Westfall Road, Rochester 14620

Next meeting is February 1, 2017

From 7-830pm

No reservations required


Facebook Live:

Kiersten Kunick, Parent Advocate, goes live on Facebook every Wednesday at 12pm.

She 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 and share! kiersten.kunick@curekidscancder.com


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.