CURE Childhood Cancer Association

November Newsletter

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A Message from the Executive Director

Happy November, CURE Families and Friends –

In November, we tend to be more mindful of what we are thankful for. This November is no different. We are thankful for all of you. As we are wrapping up our 40 year anniversary, I’d like to take a minute to recognize the “40 Friends of CURE” we have been highlighting all year. We started this planning process in December of last year and decided we would recognize about 4 people or groups per month (we know, we know…our math is a little off as there are more than 40 people recognized…but 40 sounds so much better because of our anniversary) on Thursdays as part of a #ThankfulThursday social media campaign. These people were also mentioned in our monthly newsletters. In case you missed them, here they are:

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Each person or group listed has had a significant impact on CURE and has had a friendship with us for several years. Some people have impacted the organization through their countless hours of volunteerism. Some people have helped the organization through advocacy for our families. Some people have made a difference through their sponsorships. No matter how people have helped CURE, they are valued. We appreciate the friendship of all who think of our families and do what they can to help them during the trying times in their lives. You all have made a difference. Will you join me in thanking these incredible people for all they have done for CURE?

During this month of November and throughout the holiday season, we will continue to be thankful for our supporters, both new and old. Enjoy this season with those close to you. Be sure to slow down and take in everything going on around you. We are wishing you all the best.

Sincerely,

Holly

40 Friends of CURE

Pixos Print:

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We have been working with Pixos Print for several years. This company, founded by Mike and Ron Bittner, has been wonderful to CURE and our families over the years. Almost all of our printed materials are generated at Pixos Print. Their customer service and care is second to none. And their patience with us is absolutely incredible. We may or may not be guilty of sending over requests at the 11th hour, but our friends at Pixos Print always come through for us, even having Mike or Ron drop our items off to us themselves. Seeing business owners so in touch with their clients is wonderful. They care about their clients and want to help them however they can. Every year for the Recipe for a CURE Sunday Brunch, Pixos Print kindly prints our program book for us as a donation to our organization. They’ve designed everything from banners to letterhead to car magnets and wall decals. Our friends at Pixos Print are kind and caring, even participating in our #GoldenRuleChallenge for the month of September. We appreciate them supporting our organization and, in turn, supporting our families. Thank you to Pixos Print for making a difference!

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Diane Donoghue:

It has been a year since our dear Diane has retired from her volunteer position as a receptionist and administrative assistant here at CURE, but we want her to know we continue to be sincerely appreciative of her friendship and dedication to our families! Luckily, we have seen Diane at various CURE events either as a volunteer or a guest. She dedicated over 9,000 hours of her time to our organization, assisting with thank yous and acknowledgments, but she offered so much more than that. Diane was an absolute delight to have in the office. We all looked forward to the days when she would be here. In addition to volunteering in the office, both she and her sister Joan volunteer annually at the Survivor’s Day Picnic and Holiday Party. We love having them there; their smiling faces bring joy to those around them!

Diane’s heart is with the children of CURE and their families. She has spent time at the Children’s hospital with our children when they needed some extra support over the years. She has mailed countless numbers of Thank You notes and cards to all of you who have shown your gratitude to CURE. Thank you for being so incredible to our organization and our families, Diane!!

Pet$aver Healthy Pet Superstore:
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Pet$aver Healthy Pet Superstore has been a friend to CURE for many years. When CURE originally started the 5k and Fun Walk, it was a Riverwalk at Ontario Beach Park along the Genesee River. Russ and his team from Pet$aver Healthy Pet Superstore were on site to provide treats to the four legged friends who joined us (and even treats for the four legged friends waiting for our participants at home!). They have VERY generously donated IMS Barter dollars to our organization, which we use for printing throughout the year, to keep our costs down. This is essential to CURE – we aren’t spending donated money on printing, leaving more money to directly help our children and their families. The giving doesn’t stop here, though. Pet$aver Healthy Pet Superstore is being recognized this month by the local chapter of the Association of Fundraising Professionals with an award for Outstanding Small Business. This award recognizes a small business with less than $5M in annual revenue that demonstrates outstanding commitment through financial support and through encouragement and motivation of others to take leadership roles toward philanthropy and community involvement. Congratulations!!
Additionally, Russ joined the planning committee for the annual Race With Grace 10k that occurs on Thanksgiving – as he is an avid runner himself and knew the organizers. Pet$aver Healthy Pet Superstore is a sponsor of the event, which is absolutely incredible and appreciated! Be sure to look for Russ at the 26th Annual Race With Grace 10k this Thanksgiving on November 24th. Registration is open! Visit the website here: www.rwg10k.com.
Thank you, Russ, and Pet$aver Healthy Pet Superstore for being such great friends to CURE and our families! Be sure to visit any of their locations and support local: Greece, Brighton and Webster!

Lynne & Randy Stiefler:

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You would be hard-pressed to find a couple more dedicated to raising awareness for pediatric cancer. Lynne, a former Blood and Marrow Transplant Nurse at Strong Memorial Hospital and former Registered Nurse at Children’s Hospital of Buffalo, can be seen advocating for families coping with pediatric cancer in every aspect of her life. Her t-shirt collection could likely fill the CURE office, as she is always willing and dedicated to support children all over the world coping with pediatric cancer. Her Facebook account is FULL of stories and events in support of children battling. She takes the time to research children coping with cancer and writes messages to their families. Randy, affectionately known as “Big Guy”, has also been dedicated to making a difference to children and their families. A childhood cancer survivor himself, he makes a point of attending CURE events and acting as our paparazzi for our kids and their families. He and Lynne are our official volunteer photographers, making sure to capture special moments at special events. What’s more, you ask? They founded the CURE Bears for Hope and Love program – a program that sends a personalized Build-A-Bear friend to children all over the country battling cancer. They also coordinate with local jewelry stores to collect donations of bears, which are distributed at CURE’s Annual Holiday party in addition to other events. Randy has been hospitalized for nearly a year. We have truly missed seeing him at events. Will you join us in sending well wishes and thanks to this amazing couple?
Thank you, Lynne and Randy, for making a difference in the lives of children all over the country battling these terrible diseases. YOU are making a difference!

Spotlight On Kailee Kwiecien!

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Kailee was diagnosed with rhabdomyosarcoma at age 2.  After undergoing three surgeries, twenty-five days of radiation, and 42 weeks of chemo, Kailee was found to be cancer-free!  Her port was removed six months later.  At her 9-month post-treatment scans, Kailee continued to appear completely healthy.  Just weeks after that scan, Kailee complained of leg pain and could barely walk.  A tumor had grown in her pelvis so large it broke the tip of her femur.  After surgery and biopsies, they found that the cancer was not only in her pelvis, but also in her bone marrow, and small spots were developing on her lung and kidney.  Her family was absolutely devastated.  Kailee immediately had a new port placed and began chemo. She was to undergo 36 weeks of chemo.  Although chemo was proving to be effective, at week 28 chemo was changed to a different protocol. Kailee underwent an additional 42 weeks of intensive outpatient chemotherapy.  In August 2016, Kailee completed chemo and is doing wonderful!  Her mother, father, and little sister were thrilled to send her off to kindergarten this past fall without worrying about weekly doctor appointments.  Kailee has defied all odds through her battles.  Her family knows there are no guarantees, but feel blessed to have Kailee in our lives.

Through three years of treatment, ups and downs, appointments and hospitalizations, family and friends have always been there for the family, but so has CURE.  A CURE parent has been there to greet us, comfort us, help us through every step of the way.  Three years of parking that we did not have to worry about.  Meals for parents during inpatient stays were provided by CURE.  We cannot thank them enough!


Focus of This Month

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The 3rd Annual Canvas for a CURE event was held at Saint Bonaventure University (GO BONAS!) on Saturday, October 22nd. The event was founded by a friend of CURE and a friend of a CURE family, Stephanie Dolliver. As she is in her graduate year, the event was co-organized by Gabrielle Howard this year, to ensure it will continue on in future years. This year, the event had a fantastic turn out and phenomenal sponsors! The organizers suggest a donation of $5 (which in turn comes to CURE) and the participant is given a canvas to paint. The participant can choose to donate the canvas to CURE upon completion or take it home. The canvases that are donated are given to CURE kids in our comfort bags upon diagnosis and at the Holiday Party. Over the past three years, 535 canvases have been painted and a total of $13,896 has been donated to CURE! The event is one of the projects for the University’s ENACTUS Program. This program, formerly known as Students In Free Enterprise (S.I.F.E.) teaches students the importance of social entrepreneurship and community service. Thank you to the Saint Bonaventure University community and the ENACTUS program for making a difference to our children and their families.


Pour a Little Love into Pediatric Cancer Awareness

A heartfelt thank you to the Beeman Family and their friends for coordinating and hosting “Pour a Little Love into Pediatric Cancer Awareness” – a fundraiser for St. Baldrick’s Foundation and CURE Childhood Cancer Association’s Phillip’s Gift Program. Through their efforts, $1,750 was donated to CURE!! Thank you for your dedication to families coping with pediatric cancer!!

Upcoming Events and Opportunities to Support:

26th Annual Race With Grace 10k

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Thursday, November 24th (Thanksgiving morning!) 9 AM

The Race with Grace 10K is a USA Track & Field certified road race (NY12131KL) that was established in 1991. Held on Thanksgiving morning at 9:00 AM, the race begins in front of First Bible Baptist Church on Manitou Road. Following a flat, fast course that encompasses Latta, Manitou, North Greece and Frisbee Hill Roads, the route finishes in the north parking lot of the church, adjacent to the main auditorium.

The entry fee includes a tech tee for the first 1,000 registrants a cotton long-sleeved t-shirt for the remaining registrants. There will be plenty of food and refreshments, complete computerized race results available online, and if you are in the right place at the right time, a finishing photo. Awards are given to the top male and female finishers in the open masters (40+), veterans (50+) & seniors (60+) categories.

Proceeds from the race are generously donated to CURE Childhood Cancer Association.

To learn more and to register, click here.

We are seeking a special CURE Kid to be the official race starter! Interested? Contact Holly Dutcher at holly.dutcher@curekidscancer.com ASAP!



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Barnes and Noble Partnership!

Starting November 1st and running through the holiday season, Barnes & Noble Pittsford will be collecting donations of items for our CURE families! We are so excited about this partnership…but…THERE’S MORE!

We are hosting a Bookfair at the store!

Thursday, December 1st 

Barnes and Noble Pittsford (3349 Monroe Avenue) – and online, too!

All sales in the store (including the cafe!) and ONLINE (from December 1st – December 6th at www.bn.com/bookfairs using our special code: 12032397)

We will be planning activities at the store throughout the day, so stay tuned for more info!

We are also looking for volunteers to help wrap gifts at the store on that day. Barnes and Noble is kindly donating the wrapping paper, we just need to provide the wrappers! Patrons will have the opportunity to have their gifts wrapped and can make a donation directly to CURE!

Save the date. Get excited! More information to come!!


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Are you a craft beer fanatic?!

YOU can enter for your chance to win a Ruby Street Brewing, LLC 15 gallon brew system!

Our friends at AJ’s Beer Warehouse are raffling off this great piece of equipment and proceeds will be split between CURE Childhood Cancer Association and The Anthony Poselovich Foundation! Tickets are on sale at the store or virtually (here). Drawing will be held December 30th. What a way to bring in the new year!!


We will be holding a fun programming event for our CURE kids on Wednesday, November 16th in partnership with 13thirty cancer connect!

Save the date! Stay tuned for more details!


CURE’s Annual Holiday Party

hosted by BENTE Local 2419 and Council 66

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Wednesday, December 14th at the School of the Arts

RESERVATIONS ARE REQUIRED!!!

You MUST call or email the CURE office by Wednesday, November 30th.

We cannot guarantee a gift for each child under 16 if you do not register by this date

Or you can register at

https://cureholidayparty2016.eventbrite.com

Be sure to give name with correct spelling, age and gender of each child under the age of 16 who will attend.

Immediate family members are welcome!

But please…no extended family, friends or neighbors.

If you are interested in volunteering, please contact staff@curekidscancer.com.

“A heart is not judged by how much you love, but by how much you are loved by others.”

The Wonderful Wizard of Oz

paisley heroAs we close out our ruby 40th Anniversary year, we ask that you walk the gold brick road with us one more time. The annual Holiday Heroes campaign is your last chance this year to celebrate our anniversary with us and to recognize the heroes in your life. YOU can make a difference in the lives of many by participating in our Holiday Heroes campaign. You will be honoring the hero in your life and contributing to the very important services and programs CURE Childhood Cancer Association provides to our families.

Contribute to this year’s Holiday Heroes campaign! Hero Recognition ads are each available in four levels:  Platinum ($250 – 450), Gold ($100 – 249), Silver ($50 – 99) and Bronze ($25 – 49). The Hero Spotlight ads enable you to customize a message, insert graphics or even a photo of YOUR special hero. Sizes and prices for the Hero Spotlight ads are:   5” x 5” ($800), 3.25”x 5” ($650) or 2.5” x 5” ($475).

All of these ads will be featured in the Messenger Post newspapers throughout Monroe, Wayne, Ontario and Yates Counties. The ads will appear in the Wayne Post, local Messenger Post publications in Monroe County, the Canandaigua Daily Messenger and in the Wayne County Pennysaver in late December.  Ads will also be available for viewing online on both CURE’S website as well as the Messenger Post website.

Purchase your ad today and help us honor the hero in your life!

Visit our website for more information!

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Laser Wash car wash bundles are being sold for $32.75! Buying car washes through this page helps us raise $15 for each 3-wash package sold. You receive an email with wash codes good for 3 premium washes for use at participating locations. This is a zero-cost fundraiser for us, and it gives you a good value on something you already use.

HURRY before the program ends!

Purchase washes here.

Holiday Sponsorship:

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Help a CURE Family in Need this December

Are you interested in sponsoring a CURE family this December holiday season?  Your help could brighten the holidays for a family of a sick child. For more information please contact the CURE office at 585-473-0180 or staff@curekidscancer.com.

Tuesday, November 29th 

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Visit www.ROCtheDay.org and designate CURE Childhood Cancer as your charity of choice on Tuesday, November 29, 2016

Don’t forget to designate – CURE’s number is 1028!
ROC the Day updates will be posted on Facebook and Twitter via #ROCtheDay. To learn more about ROC the Day, view a live event countdown and see a list of sponsors and community partners, visit www.ROCtheDay.org.

Let’s ROC!

We want to hear from you!

  • 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 or Tonia 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
  • Are we doing a good job? Share stories about staff members helping you and your family. We’d love to hear!


Painting with a Twist Fundraiser:

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To benefit CURE Childhood Cancer Association

January 22, 2017

Henrietta Location

6 – 9 PM

Bring your own alcohol beverages

3259 S Winton Rd #104, Rochester, NY 14623


Thank You Upstate Farms:

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upstateUpstate farms shows their support by donating gallon milk jugs to CURE when we start our Annual Penny Drive fundraiser! The Penny Drive Fundraiser starts in September and runs until June. CURE brings gallon milk jugs into Rochester schools and students fill them with spare change. The drive usually lasts 1 week and CURE picks up the jugs and calculates the total amount raised. We cannot thank upstate enough for their generosity. Annually, the penny drive raises around $4,000!

 Are you interested in hosting a Penny Drive at your school? EVERY PENNY COUNTS!

                                                                                                           E-mail staff@curekidscancer.com


Bereaved Families Corner

Coping with grief during the holidays…

  1. DECIDE WHAT YOU CAN HANDLE COMFORTABLY AND LET FAMILY AND FRIENDS KNOW.  Can I handle the responsibility of the family dinner, etc. or shall I ask someone else to do it?  Do I want to talk about my loved one or not?  Shall I stay here for the holidays or go to a completely different environment?
  2. MAKE SOME CHANGES IF THEY FEEL COMFORTABLE FOR YOU.  Open presents. Christmas Eve instead of Christmas morning.  Vary the timing of Chanukah gift giving.  Have dinner at a different time or place. Let the children take over decorating the house, the tree, caking and food preparation, etc.
  3. RE-EXAMINE YOUR PRIORITIES: GREETING CARS, HOLIDAY BAKING, DECORATING, PUTTING UP A TREE, FAMILY DINNER, ETC.   Do I really enjoy doing this?  Is this a task that can be shared?
  4. CONSIDER DOING SOMETHING SPECIAL FOR SOMEONE ELSE.  Donate a gift in the memory of your loved one.   Donate money you would have spent on your loved one as a gift to a charity.  Adopt a needy family for the holidays.  Invite a guest (foreign student, senior citizen) to share your festivities.
  5. RECOGNIZE YOUR LOVED ONE’S PRESENCE IN THE FAMILY. Burn a special candle to quietly include your loved one.  Hang a stocking for your loved one in which people can put notes with their thoughts or feelings.  Listen to music especially liked by the deceased.  Look at photographs.
  6. IF YOU DECIDE TO DO HOLIDAY SHOPPING, MAKE A LIST AHEAD TO TIME AND KEEP IT HANDY FOR A GOOD DAY, OR SHOP THROUGH A CATALOGUE.
  7. OBSERVE THE HOLIDAYS IN WAYS WHICH ARE COMFORTABLE FOR YOU.  There is not right or wrong way of handling holidays.  Once you’ve decided how to observe the time, let others know.
  8. TRY TO GET ENOUGH REST – HOLIDAYS CAN BE EMOTIONALLY AND PHYSICALLY DRAINING.
  9. ALLOW YOURSELF TO EXPRESS YOUR FEELINGS.  Holidays often magnify feelings of loss.  It is natural to feel sadness.  Share concerns, apprehensions, feelings with a friend.  The need for support is often greater during holidays.
  10. KEEP IN MIND THAT THE EXPERIENCE OF MANY BEREAVED PERSONS IS THAT THEY DO COME TO ENJOY HOLIDAYS AGAIN.  THERE WILL BE OTHER HOLIDAYS SEASONS TO CELEBRATE
  11. DON’T BE AFRAID TO HAVE FUN.  Laughter and joy are not disrespectful.  Give yourself and your family members permission to celebrate and take pleasure in the holidays.


Reingold, Inc. is working with an NCI-designated children’s cancer research hospital to create a website as a resource for patients and families experiencing pediatric cancer. Talking directly with individuals who are experiencing or have experience with childhood cancer — including patients and their families — is the only way they can make sure that the site is as helpful and relevant as possible, and actually meets their needs.  The insights of those who participate will directly impact the course of their work — and help build a resource that supports others like them now and in the future.

Participation should only take 30-60 minutes, by phone or in an online survey, and will, of course, be compensated.

You can direct those interested to https://www.surveymonkey.com/r/2KN5LVK (for patients and survivors) or https://www.surveymonkey.com/r/2KKGDLD  (for family members).

Support:

Bereavement Group:

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The first Wednesday of each month

Hosted by bereaved parents, Jim & Andrea Spencer

200 Westfall Road, Rochester 14620

Next meeting is November 2, 2016

From 7-830pm

No reservations required


ROC City Sicklers:

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The third Tuesday of each month

UR Medicine

Conference room ACF A/B

Next meeting is November 15, 2016

6-730pm

Free Parking

Food provided by Wegmans


Facebook Live:

Kiersten Kunick and Tonia Jones, Parent Advocates, go live on Facebook every Wednesday at 1pm.

They can answer any questions during this time, share upcoming news, provide support and connect parents with other parents.


Outpatient:

2nd Wednesday of the month

10am-11am

CURE Office- 200 Westfall Road, Rochester 14620

no RSVP needed


Holiday Support:

For resources on where to get help and support this holiday season:

http://www3.libraryweb.org/uploadedFiles/MCLS/Central/Departments/Information_Center/HOLIDAY(1).pdf


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.


Karate For Kids @ Gilda’s Club of Rochester:

Saturday mornings from 9am to 10:30am

October 1st, 15th & 22nd | November 5th & 12th

Instructor from Master Kim’s Taekwondo

coffee and complimentary breakfast for parents during the class

RSVP to JJ at 585-423-9700 ext 315 or jjohnson@gildasclubrochester.org