CURE Childhood Cancer Association

July 2016 Newsletter

CURE main logo pic

A Message from the Executive Director

Happy Summer, Friends!

I can’t believe I am typing that. I can’t believe it is already July. Looking at the shelf across from my desk, I see a picture of our daughter Charlotte, one of our CURE kids and myself from the Survivors Day Picnic a few weeks ago. I have a similar picture from last year (just without Charlotte, of course) on the shelf above my desk. In looking at the picture, it’s so funny to see how much can change in just a year. This CURE kid went from making goofy faces in a picture with me last year to a preteen in the blink of an eye. Aside from the thought of time flying and things changing, I also think of things evolving. My friendship with this particular CURE family started about four years ago when I was a volunteer at CURE and has evolved since then. I first met them when she was on treatment, and here she is four years later with beautiful hair to match her beautiful smile. I love hearing about how she is doing and what exciting things she has coming up.

Thinking back on the Picnic, I realize that many of our families establish relationships with each other while their children are being treated. Many have taken other parents under their wing and have befriended them. They’re lucky to have each other to lean on and bounce ideas off of. But it made me think. What about the parents who perhaps aren’t outgoing or their child’s treatment plan doesn’t give the opportunity to meet other parents? We are in the process of building CURE’s Strategic Plan for the future. One of the steps I took was to meet with some CURE parents to talk about our programs. Based upon these discussions, there seems to be a general lack of social opportunities for parents of children who have cancer or chronic blood disorders. But how could this be? Social interactions are important. Supporting each other is important. As such, CURE is working on some opportunities to encourage parents to get out of the house and socialize with other CURE parents. The first such opportunity is at Painting With A Twist in Henrietta on August 11th. Participants will pay the normal fees to participate, but CURE will provide snacks and soda. We are hoping this will be well attended and will be the first of many social opportunities for parents to connect outside of the hospital walls, outside of Bereavement group and outside of clinic. We are also planning another opportunity, which will be free of charge to our parents, on October 21st at Lasertron in Henrietta (but is limited to 20 people, so once the info goes out, you’ll want to be sure to sign up while spots are available!). What do you think? Is this something we should plan more of? I realize these two opportunities are in Henrietta, so we will make an effort to look into other towns as well. I love what I do. I love being able to help. Please help me provide services and programs that you all want to see and participate in. Feel free to e-mail me (holly.dutcher@curekidscancer.com). I want to make sure we are supporting you before, during and after treatment. Once you are a part of the CURE family, you always are a part of the CURE family. We will continue to be here for you – as long as you allow us the privilege of being a part of your lives.

We have many events this summer, which I am hoping to see you at:

July 17th: George Park Memorial Golf Tournament

July 17th: 5th Annual Cutting 4 A CURE

13466329_931896705015_7796494209366456423_n (You don’t HAVE to cut your hair off, but holy moley I did!!)

July 25th: 1st Annual Patrick Carr Memorial Golf Tournament

July 29th: Ontario Insurance Company presents the Gathering for Hope Gala

July 30th: Family Fun Day at Harmony Hill Farm

(WOW!! What a busy week!)

August 6th and 7th: Park Ave Fest

WHEW! We have a busy summer here at CURE and will be planning our flagship event, the Recipe for A CURE Brunch AND we are working on some projects for September for childhood cancer awareness month!

With that, we at CURE are wishing you and your family a happy, healthy summer! Be sure to stop and enjoy the sunshine 🙂

Spot Light On..


Buddy (Warren) Oderkirk:

buddy

Buddy rang the bell of hope to signify his last chemo treatment at Golisano Children’s Hospital on Monday June 27th. Surrounded by his family, friends and Fiancè, Alex. He was diagnosed with Rhabdomysarcoma in May of 2015.


Zoe Hill:

zoe

This is Zoe, she was diagnosed with AML at the end of January this year. Surrounded by her family and friends, she rang the bell of hope signifying her last chemo treatment at Golisano Children’s Hospital at Strong, on Tuesday, June 28th.

40 Friends of CURE

Don Miller:

Do you have anyone in your life that the very thought of them or sight of them makes you smile? Don Miller is that person for the staff here at CURE. He is the driving force behind the Webster Xerox Good Neighbor Community Program. He has helped a number of organizations in the Rochester community throughout his lifetime, understanding the importance both of monetary donations and donations of time and services. It was through Don’s kindness that the storage closets were built in the downstairs area of the CURE office, saving us money because we no longer had to utilize offsite storage. He also coordinated the CURE office being painted the summer of 2014. Any time CURE has an event, he contacts the office to offer his support. We LOVE seeing him and chatting with him because the magnitude of the impact he has made on this community is absolutely incredible.

The Good Neighbor Community Program, established in 2003, offers volunteer opportunities for Xerox employees to engage in fundraising and personal support activities for employees as well as “Neighbors-in-Need” under our BECAUSE WE CARE BANNER. Annual activities include: Trikes-for-Tykes Campaign, CURE Childhood Cancer Association Penny Drive, United Way Day of Caring events, Monroe Community Hospital “Senior Prom”, Back-to-School Supplies Drive, The Annual Breast Cancer “Chili Dog Fest”, and Angel Tree gifting Campaign.

Tim Lane & Joelle Lane (and family!!):

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Tim & Joelle Lane have been coordinating and hosting the Annual Our Charity Events Motorcycle Poker Run for 16 years! Through their tireless work and commitment, over $65,000 has been donated to CURE as a result of this event. $65,000!!!! They have made a TREMENDOUS impact on CURE and our families. Their event is an organized, fun day for bikers and non-bikers alike! They recruit family and friends to make this such an incredible event every single year. The Rush Creekside Inn kindly hosts the event every year and music is provided by Flint Creek and Two Worlds. We appreciate the commitment of DJ Jim Archibald for participating in this event, too!! This year’s event is taking place on Sunday, August 28th. We hope to see you there!

Be sure to check out their website: ourcharityevents.com

Dillon Family:

mark dillon 1

Each year the Dillon Family hosts a golf tournament to remember the life of their son and brother Mark.  Mark was an inspiration to all who knew him and his legacy lives on with his family.  The family has grown over the years but their desire to make a difference in lives of families coping with childhood cancer has continued and grown too.  For 32 years, a portion of the proceeds from the golf tournament is distributed to local charities of which CURE Childhood Cancer Association has been an honored recipient!  Thank you to the Dillon Family for keeping CURE’s families in your heart all these years!

mark dillon 2

TOPS Friendly Markets

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TOPS Friendly Markets has been a supporter of CURE for many years. Between sponsoring our Recipe for a CURE Sunday Brunch and 5k and Fun Walk over the past several years to providing donated water to events such as the Race With Grace, we can truly call TOPS Friendly Markets friends of CURE. This year, they went above and beyond by including us in their annual Celtic Faire at the Radisson Hotel Rochester Riverside for the St. Patrick’s Day Parade! CURE was their charity of the year for this event, receiving donations at the door. We are truly appreciative of their support and advocacy and look forward to continuing our relationship for many years to come!

Save these Dates! We hope to see you here!


4th of July Pool Party:

pool party

Hosted by the Radisson Rochester Riverside Hotel and 98PXY at the Radisson, located at 120 East Main Street. from 7pm-10pm, come enjoy a cookout, rooftop pool fun and  prime spot for the Rochester fireworks!

All donations made at the entrance will be generously donated to CURE. We would like to thank all of our friends at the Radisson!


Cutting 4 A CURE:

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Sunday July 17, 2016

Simply Glamorous Salon & Spa

from 10am-4pm

(1780 East Ridge Rd, 14622)

Beau Monde Salon & Spa

from 10am-4pm

(7181 NY-96, 14564)

for a fun-filled day to raise money and awareness for

CURE Childhood Cancer Association

and to collect hair donations to send to

Children With Hair Loss

Check out our website for more information: https://curecca.ejoinme.org/c4ac


George Park Memorial Golf Tournament:

July 17

11:30 am – 5:00 pm

Cost:$75

2nd Annual George Park Memorial Golf Tournament
CenterPointe Golf Club
2231 Brickyard Road
Canandaigua, NY 14424

Sunday, July 17, 2016
Lunch 11:30 ~ Shotgun Start 1:00 ~ Fee $75.00
Proceeds go to CURE Childhood Cancer Association
Includes Lunch/Golf/Carts/Tax/Tip – Checks payable to Robert Park
Mail to Robert Park, 41 Tamarack Drive, Canandaigua, NY 14424
For more information please e-mail RobertCareyPark@gmail.com or call Rob at 585-733-4477

1st Annual Patrick Carr Memorial Golf Tournament:

patrick carr

July 25 : 9:30am – 5 pm

Chili Country Club

760 Scottsille-Chili Road

Scottsville, 14546

$85 Individual | $340 Per Foursome

https://curecca.ejoinme.org/PCM2016

includes Golf, Cart, Lunch and Dinner

shotgun starts at 11:00am

all proceeds donated to CURE

Gathering for Hope Gala:

hope

Gathering for Hope Gala

Presented by Ontario Insurance Company

Friday, July 29th

Club 86- 86 Avenue E, Geneva, NY

Cocktails begin at 5:30

Dinner will be served at 7

Music and dancing to start around 8:30

July 29
5:30 pm – 11:00 pm
$100
 http://curecca.ejoinme.org/oicgala

Harmony Hill Farm Fun Day:

harmony hill farm

Free of charge for ALL CURE families

July 30th, from 1-4pm

2242 State Route 444, Bloomfield, NY 14469

Includes: princesses, lunch, ice cream, games, crafts, pony rides, petting zoo, tractor rides, puffy paint t-shirts, and much more.

visit their website at http://harmonyhillponyrides.com

All services donated by Sheila Sulli, Farm Owner.

To sign up, go to https://harmonyhillfarm.eventbrite.com

if you would like to volunteer, please go to

http://vols.pt/ABEbg8


Park Ave Fest Volunteers Needed!

August 6th and 7th

Shifts for August 6th

12pm-3pm

3pm-6pm

Shifts for August 7th

9am-12pm

if you are interested in volunteering at the CURE booth selling magnets, sharing information about CURE and handing out prizes, please contact chelsea.lepore@curekidscancer.com


Focus of the Month!

Hot Dog Day:

hot dog day 1

Saturday, June 11th was hot dog day at Tryon Park for Eastside Little League. Every penny from hot dog sales that day were donated to CURE in memory of Amanda Conrow, a young girl who passedhot dog day 2 away in February of 2015. An anonymous donor donated all the hot dogs for this day. We are so grateful for the ongoing incredible support of the entire Conrow Family.


William and Mildred Levine Grant:

Thank you to the William and Mildred Levine Foundation for their second installment of a multi-year grant to the Parent Advocate Support Program. We couldn’t do our good work without you and we appreciate your long-term commitment to helping families during the most difficult days of their lives.


Ronald McDonald House Grant:

The Ronald McDonald House Charities of Rochester generously awarded CURE a grant of $3,600 for food vouchers for our families at Golisano Children’s Hospital. They held a short ceremony at the house to receive the grant, gave a tour and introduced us to a couple kids who are staying there for the summer. Thank you so much for all your hard work and generosity, and for supporting not only our organization, but our families as well.

ronald mcdonald house


Corn Hole Tournament:

Sunday, June 26th was the 2nd Annual Corn Hole Tournament at Romig’s Tavern in Rochester. It was hosted by Raider Nation Rochester and they very generously donated the proceeds of $750 to CURE.

a


Nosh Restaurant (47 Russell Street, 14607):

A new restaurant opened in Rochester that now partners with CURE for “Corn Dogs for a CURE”. Nosh will donate $1 from every corn dog appetizer ordered to CURE! Bostrom Farms in Rochester will also match their donation by donating $1 for every sale! Get over there and check it out! The food is delicious!

better corn dogs


World Sickle Cell Day:

The ROC City Sicklers has celebrated Annual World Sickle Cell Day at the Rundel Public Library! On June 19, 2016, everyone gathered in the heart of downtown Rochester to honor such an important cause for our past and present survivors of Sickle Cell Disease. The library exuded with red lights around the building, they offered words of affirmations and a balloon launch in remembrance of all our warriors and wrapped up with an Ice Cream Social! Special thanks goes to Jessica LaManna and her staff at the Rundel Public Library, Abbott’s Frozen Custard, Nate Brown- Fox News 1280 AM and  Norma Holland- 13 WHAM ABC for their continued support of our cause in helping us honor, raise awareness and celebrate World Sickle Cell Day!

world sickle cell day


Songs of Love Foundation

Songs of Love Foundation, an organization dedicated to providing personalized songs, free of charge, to uplift children and teens facing tough medical, physical, or emotional challenges. Each CD is professionally produced with lyrics containing the child’s name and references to all of his or her favorite activities, things, people, and pets. Songs are written and performed in any language in the musical style that the child likes (Kids, Pop, R&B, Rap, Rock, Alternative, etc.) by talented singer/songwriters.

you will find links to our organization as well as profile sheets parents or family members can fill out to request a song.

http://www.songsoflove.org

English profile Sheet:

www.songsoflove.org/solprofilesheet.pdf

For our Spanish profile sheet go to:

www.songsoflove.org/SOLSpanishProfileSheet.pdf

You can also fill out the song request form online for both English and Spanish at www.songsoflove.org/request.

Upcoming Meetings

Bereavement Group:

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

The first Wednesday of every month

Next meeting: July 6, 2016

Located at the CURE Office

200 Westfall Road, Rochester, NY 14620

no reservation required

ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of every month

Next meeting is July 19th

6 – 730 pm

UR Medicine-

Conference Room ACF A/B

Painting with a twist for CURE parents:

It is our goal to begin organizing social events for CURE parents to reach out to one another in an environment outside hospital walls and group sessions. We want our parents to be social and enjoy each other. As such, we are starting to set up social events for CURE parents. The first event is being held Thursday, August 11th from 7 – 9 PM at Painting With a Twist in Henrietta (3259 South Winton Road #104, 14623). We need at least ten parents to sign up for this event. The cost is $35 and you will paint a piece of art! CURE will provide snacks and soda. Please feel free to bring your favorite wine to enjoy while making your masterpiece!

pwat

Click Here to Sign Up

Password: CURE



Cyber Sport for CURE parents:

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Friday, October 21st

Up to twenty CURE parents can enjoy the fun of Cyber Sport at Lasertron in Henrietta on Friday, October 21st!

The event is free of charge, but we can only register 20 people. Food and soda will also be provided.

Stay tuned for more details, but be sure to sign up ASAP with Chelsea LePore (chelsea.lepore@curekidscancer.com).



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!
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Small pocket/purse-sized calendars
  • Gifts for boys and girls
  • manicure sets
  • Items for teens or young adults
  • Toys for kids under 3 years old

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


Ongoing Programs

Provided free of cost to our families

  • Boost Tutoring (See article above for more information or go to our website at www.curekidscancer.com) or contact Linda Bolan atLinda.Bolan@curekidscancer.com
  • Coffee Group meeting for on-treatment families; Thursdays from 1-2 pm in the Kaiser Room, 4th floor Golisano Children’s Hospital near the red elevators.
  • Voyage Beads- Patients can use colorful beads to build a tangible representation of their journey through cancer treatment.
  • Vouchers for free parking are provided to families of CURE children who are hospitalized or visiting the outpatient clinic.
  • CURE Bears for Hope and Love. Build-A-Bears are sent to children who are undergoing treatment for pediatric cancer.
  • Emergency financial assistance for on-treatment families.
  • Comfort bag for newly diagnosed families.
  • Emotional support and guidance from CURE’s Parent Advocate.
  • Educational Programs about school issues for patients and long-term survivors.
  • Bereavement Support for families experiencing loss.
  • Social Gatherings including Cancer Survivor’s Day picnic, Holiday Party and Morton Fall Family Fun Day.