CURE Childhood Cancer Association

December Newsletter

CURE main logo pic

A Message from the Executive Director

Season’s Greetings, Friends of CURE.

Reflecting on 2016, it has been a tremendous year for CURE. We celebrated 40 years of making a difference in the Rochester community, which may seem like a small accomplishment, but 40 years is a long time. We had phenomenal events this year, worked hard to increase awareness of our organization and childhood cancer and sickle cell awareness month, made new friends and reconnected with old friends. We worked hard to do what we could to make a difference to our families – alleviating burdens they found themselves under and offering support when we could. Personally, I think the highlight of my year was having the opportunity to meet with early families who worked so hard to build the foundation of CURE 40 years ago. We gathered for a luncheon on October 8th and I had the privilege of meeting these incredible people, who collectively turned their individual tragedies into a legacy of helping future families facing similar struggles. What an incredible group of people. Their tireless dedication to the cause is commendable. It truly was humbling to be in a room of such strong, inspiring people. Advocating for parents is the founding principle of our organization. It’s at the core of our beliefs and the stem of everything we do. We will continue to keep parent advocacy at the heart of the organization, in honor of the founding members of CURE.

In the two and a half years I have had the honor of working at CURE, there is one individual who has and will always stand out to me – John Sturge. For those of you who are unfamiliar, John is one of the founding members of CURE Childhood Cancer Association. In early 2015, I approached John about my desire to create a strategic plan for CURE – as it had been some time since CURE had done this. With his extensive knowledge of both the strategic plan process and the history of CURE, he was the perfect mentor for this project. I got to know John more over the next several months, as he diligently came to the office for weekly meetings with myself and the CURE staff to discuss the four pillars of our organization: programs, financial support, collaboration and marketing. The end result was a year of work, a strategic plan for CURE’s future and a more confident leader. I will forever carry the lessons from John with me as I continue to work for CURE, hopefully helping us grow, expanding our programming and offering the best support to families that we can. Sadly, John passed away in late October, just after our celebration of 40 years and annual Recipe for a CURE Sunday Brunch. We recently kicked off our Holiday Hero campaign, inviting friends of our organization to recognize someone special in their life. This year, my Holiday Hero is John Sturge. He faithfully helped to make CURE what it is today through his dedication to our families. Who is your Holiday Hero?

In closing, I would like to wish all of you a happy holiday season. Cherish the ones you love. Savor every minute.

Thank you for making this year one to remember.

From all of us at CURE,

Happy Holidays!

Volunteer of the Month

If you have been to an event this Fall, you were sure to see our devoted intern, Brooke. Ready and willing to offer a helping hand anytime we needed it, Brooke was a tremendous asset this semester. As a Senior in the Women’s and Gender Studies program at SUNY Brockport, Brooke chose to volunteer with CURE and fulfill her internship requirements working with our staff. We feel as though she went above and beyond for our children and their families, and we are sincerely appreciative. Brooke has even gotten her two adorable daughters involved with our organization – bringing them to events and the office to offer a helping hand in addition to participating in our Trick-or-Treat for CURE program. We are sincerely appreciative of the support, dedication and friendship Brooke has shared with us. We will miss her next semester. Brooke, you did a phenomenal job with us this semester and your humor, work ethic and genuine nature will be missed.

We wish you the best of luck in your future endeavors!

brooke

40 Friends of CURE

The Messenger Post:

messenger-post

Our friends at The Messenger Post are wonderful! For the past 6 years (this is our 7th), we have partnered with The Messenger Post for our annual Holiday Heroes campaign. We work together to create the perfect insert for local Messenger Post papers, showcasing some of the best heroes around and highlighting CURE Childhood Cancer Association and the work we do in the community. In addition to be such great friends to CURE through this process, they are constantly working to be supportive of our organization and our CURE kids. For the last several years, they have purchased a sponsorship to attend our annual Recipe for a CURE Sunday Brunch. Additionally, they reach out periodically to see if there is a CURE child they could focus on or include a story about. We appreciate the partnership and the opportunity to work with such a loyal local business!

BENTE Local 2419 and Council 66:

bente-group

For over 25 years, the incredible people who are a part of the non-teachers union BENTE Local 2419 and Council 66 have been planning and executing a phenomenal holiday party for the children and families of CURE. This event is complete with games, food, crafts and even visits with Santa himself! Their generosity doesn’t stop there. They lovingly provide gifts to every child in attendance under the age of 16. Annually, we have anywhere from 150 – 200 children attend the event. A magic show entertains the kids, a DJ plays music and encourages dancing and in the distance, you can hear the “Ho Ho Ho” of Santa and the glee of children. We can honestly say this is one event our families look forward to every year, thanks to the hard work and dedication of BENTE Local 2419 and Council 66. Thank you for giving our children something to look forward to with excitement and providing a magical experience for our children year after year.

Crane Elementary School:

There are some beary caring kids and staff over at Crane Elementary School! For several years, they have been facilitating a program where they perform acts of kindness to earn points. The points are then “turned in” for the makings of a stuffed animal (purchased by the school). These stuffed friends are then donated to CURE and are distributed to our newly diagnosed kiddos so they can make their own special friend. Additionally, for the past 16 years, they have run (literally!) a fundraiser and donated the proceeds to CURE. Their Physical Education teacher, Cheryl Barr, organizes the event during the kids’ gym class. The gym is set up like a race track and the kids are placed in teams. They will run 2 to 3 laps around the gym and then tag in their team members to take over. For that week, the kids also bring home envelopes to fill with donations from friends and family members. At the end, they total the miles run and the total donations collected. This school has been so supportive of CURE over the years and we cannot thank them enough for their dedication. Thank you for being such great Kids for CURE and making a difference to our children and their families!

Marilyn Schroeder:

We would like to thank our friend, Marilyn Schroeder. If you have received a comfort bag over the last several years, you should have received a handmade pillow from our friend Marilyn. These pillows come with the most vibrant, fun, perfect colors and patterns, but there is so much more that goes into them. They are rectangular in shape so that our kids can have a soft spot to rest their arm if they are receiving treatment, transfusions or IVs. They are also a great neck pillow for those days when our kids are stuck in a chair receiving treatment for awhile. What a great way to brighten up the room and get comfortable during what can be a long day. These pillows are made with love by Marilyn, who drives quite a ways to deliver them to our office. Thank you, Marilyn, for thinking of our kids and helping to make a hard time just a little easier.

Spotlight On Dominic!

dominic-kid-chef

On Monday, November 30, 2015 Dominic was diagnosed with Stage 1, type 2 Rhabdomyosarcoma (Alveolar Rhabdomyosarcoma). On Wednesday December 9, 2015, Dominic began his 42 week cancer protocol. This protocol consisted of weekly chemo therapy treatments, some lasting 8 hours, others 30 mins. In February of 2016, he started his 5 week radiation therapy.  After 30 total chemotherapy treatments, and 25 total radiation treatments, Dominic is now cancer free! He followed his protocol without any delays and he kicked cancer’s butt. On Wednesday September 14, 2016, he proudly and anxiously rang the Bell of Hope with his family by his side.

Throughout all if this Dominic has maintained a pretty normal life. He still attended pre-school with all his friends, joking with the teachers that his hair is going to grow back blue and curly. He still enjoys riding his 4-wheeler and Dune buggy with his little sister, Sofia following behind. His favorite food is still Macaroni and Cheese, and he still dislikes mushrooms.  Over all, Dominic is an inspiration to his family.

Focus of This Month

WRDGA Ladies’ Golf Tournament

WOW!!! You really chipped in FORE our kids. A HUGE thank you goes out to the WRDGA who chose CURE to be the recipients of the funds raised through their annual golf tournament. A WHOPPING $2, 945 was raised for CURE – just shy of the equivalent of two months of parking passes for our families. We cannot thank you enough for thinking of our organization!

Trick-or-Treat for CURE

We would like to thank all the kiddos who thought of CURE this past October and went trick-or-treating for CURE. We would like to especially highlight our friend Braxton, who alongside his cousins, raised $75.18 for CURE!

Thank you for being so awesome, Braxton!

img_0903

Aquinas Girls’ Modified Soccer Team

The Aquinas Girls’ Modified Soccer Team knows that every penny counts with CURE! They collected change during the month of September for a total of $255! They wanted to recognize that September is Childhood Cancer Awareness Month and they sure did recognize it in a big way! Thank you, girls, for thinking of our children and their families.

large_news1066500_980456           large_news1066500_980455

ROC City Steelers Club

Thank you to our friends at  ROC City Steel Club who hosted their annual tailgate party at MicGinny’s. This year they raised $1,500 for CURE! We thank you for your continued support and generous donation!

img_3951

Honeoye Falls Lima Women’s Swim Team

Thank you so much to the Honeoye Falls Lima Women’s Swim Team who raised an amazing $2,807.75 for CURE with a 100 mile relay. You girls rock!!

           hfl

47a354f5f0adb53a0f129521f3d30a2e

This year marked the 26th year of Race with Grace.  Even though it was a rainy cold morning, that didn’t stop over 800 participants from coming out. We would like to give a huge thank you to all the volunteers and organizers who made this wonderful event happen, thank you for your continued support of CURE!

           5

100% Club- These five men have ran in ALL 26 years of Race with Grace!!

4

It was a rainy day but that didn’t get in the way of having some fun!

Upcoming Events and Opportunities to Support:

3rd Annual Tacky Sweater Party

tack-sweater-party-flyer-edited-postcard-05


ruby_street_brewery_web_1024x1024

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!!

logo

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.

cure-santa-vertical-ad-470x450

“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 Heroescampaign 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!

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!

amazon smile

Don’t forget to use Amazon Smile when doing your holiday shopping!

Did you know that Amazon Smile works JUST like Amazon except you can be supporting your favorite charity while shopping?! If you select CURE (see link below), a percentage of your purchase will be donated to us! Shopping AND helping local families? Can it get any better?! Just click here to be taken to the Amazon Smile site. Once you’re there, make sure you add it to your bookmarks so you remember to give to CURE every time you shop Amazon.

Painting with a Twist Fundraiser:

 painting-with-a-purpose

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

Our most sincere condolences…

John Sturge, October 27th

Warren “Buddy” Oderkirk, November 15th


Bereaved Families Corner

Navigating Grief During the Holidays...

By David J. Roberts became a bereaved parent after his daughter Jeannine died of cancer at the age of 18.

The pain of grief tends to surface with great intensity during  “milestone” events.  Birthdays, anniversaries and holidays are typical events that are associated with our grief journeys. The intensity of grief is usually highest for many during the first year that these milestone events are experienced. However, people will experience pain of varying intensity during these milestone events beyond the first year. There is no timetable to resolve grief and in many cases; journeys are lifelong. Experiencing pain at any time during the process is to be expected.

Under normal circumstances, preparing for any holiday can be stressful as well as tiring. When a loved one dies, completing these holiday tasks become complicated by the intense pain of grief and the physical, emotional, and cognitive changes that accompany it.   Our grief may be so painful that we question whether to celebrate the holidays at all.

Although there are no sure solutions as to how to prepare for the holidays, there are some things that may be helpful:

–         Educate yourself by reading books or articles on grief and attending a lecture on coping with the holidays.

–         Identify strengths or strategies that helped you adjust to previous losses in your life. These may be losses related to death or losses not related to death (e.g., divorce).

–         Try to develop as much support from family and friends as you can. Tell them that the holidays may be emotionally and physically draining for you, and how they can best help you during this time.

–         Allow some time to feel sad. Have a good cry if you need to.

–         Be careful with use of alcohol and medications, either separately or together.

–         Save your energy for the most important things.

–         Delegate! Let others share the workload by preparing food and helping with decorations.

–         If you need quiet time, take it.

–         If you aren’t up to a large family affair, have a scaled down gathering with a few close family members and friends.

Others may have difficulty saying the name of your loved one for fear of upsetting you or because they are uncomfortable with their own feelings. You may decide to initiate the discussion of your loved one and may be hesitant to do so because it may be very painful. That is completely understandable, but the pain may be lessened or replaced by joy due to some wonderful shared memories. Plus, we want to say and hear the names of our loved ones.

The anticipation of the holiday season and the days leading up to it may be more stressful than the actual day. Also, if there are certain holiday functions that you don’t have the emotional strength to confront, it is ok to avoid them. Remember, you can grieve as you see fit!


ceremony


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:

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 December 7, 2016, treats will be provided

From 7-830pm

No reservations required


ROC City Sicklers:

roc-city


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.