CURE Childhood Cancer Association

October Newsletter

CURE main logo pic

A Message from the Executive Director

I love Rochester. I don’t think I say it enough. I love our City. I love the sense of community, philanthropy and genuinely wanting to help your neighbors.

For the past several years, we at CURE have been working hard to increase awareness of childhood cancer and chronic blood disorders, specifically in the month of September. Hopefully this past month, you saw lawn signs, a billboard, heard PSAs on the radio or saw one of the news stories that discussed the importance of raising awareness. Every year, it blows me away to see the support from our neighbors and the efforts they go through to increase awareness. We will have a special edition of our newsletter coming out mid-October to highlight the businesses and individuals who did something to help raise awareness in September (that we know of).

The reality is that approximately 100,000 Americans are living with sickle cell disease. This year, we’ve been consented to help 8 families coping with sickle cell disease. We posted some great educational information on our Facebook page this past month and hope you’ll take a look. Educating the community about these diseases is how we can help make a difference. If you haven’t yet, please take a look. My favorite piece of information we shared was an illustration explaining how a pain crisis happens for our kids with sickle cell disease (see below).

In 2017, 45 children with cancer have been consented to our programs and services. Annually, over 15,000 children are diagnosed with cancer in America. What many people do not realize is there are residual and long-term affects of cancer and its treatments, especially on children. So yes, survival rates are increasing, but approximately 80% of survivors develop one or more chronic conditions as a result of their treatments. Support from our incredible community allows us to follow our kids for as long as we can – offering programming, resources and support.

We thank you for your continued support and advocacy. Our families thank you, too. Please continue to be this beautiful, caring City with the mission of helping those around you. It’s a privilege to be here and be a part of it…until no parents ever have to hear the words “your child has cancer” or “your child has a chronic blood disorder” or “your child has a brain tumor“.

Spotlight On Aiden!

Aiden is a sweet, energetic, handsome and loving 7 year old. He attends school as a second grader and enjoys being part of the Boy Scouts Troop  and various sporting teams throughout the school year.  He is the eldest of two boys and loves playing with his little brother Bryan.

On Nov 7th 2016, Aiden was diagnosed with Large B Cell lymphoma following an urgent surgery to remove a mass. Even before Aiden was diagnosed, Aiden has always been the strongest and most resilient little old boy you could ever imagine. Even during his treatments, if the doctors weren’t insisting that he was ill one would never know.

Aiden is not defined by his situations, he is defined by his character.

Every morning during Aidens treatment we would wake up and take the day head on. The most amazing part is he managed to do this with a smile, whether it was joking with his doctors & nurses or getting other kids on the floor to leave their rooms and play; he brought laughter wherever he was.  He never complained and continued to embrace life fully.

You can meet Aiden at the 9th Annual Recipe for a CURE Sunday Brunch where he will be featured as one of the Kid Chefs! 

Free CURE Programming and Events

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 or Adella at the hospital.

Educational Program – Back to School
October 24, 2017, 6:00 – 7:30 pm
Five Star Bank Community Room, 395 Westfall Rd, Rochester, NY 14620

Do you have questions and concerns about your child’s schooling after diagnosis of cancer, brain tumor or blood disorder? Join Kathryn Wissler, M. Ed on October 24th for a presentation on what you should know about your child returning back to school and have the opportunity to ask her questions you may have!

This event is free to CURE parents. Please email sam.corrigan@curekidscancer.com to RSVP!

Join us for our next Parents Night Out!! 
Friday, October 20th at 7:00 pm
VerHulst Farms
5161 Ridge Rd West
Spencerport, NY 14559
Stay after the hayride for some yummy donuts and apple cider! Limited spots available. First come first served – RSVP to sam.corrigan@curekidscancer.com to reserve your spot!

Join us for Bereaved Parents Night Out
November 29th, 2017, 6:00 – 8:00 pm
Studio 34, 34 Elton Street, Rochester, NY 14607

Join us at Studio 34 to make a special ornament! The ornaments will be available for pick up at the office before the December Bereavement Meeting (December 6th). Spaces are limited. Please email sam.corrigan@curekidscancer.com to RSVP!

We still have backpacks available for CURE Families! Please stop by the office during business hours to pick one up if you are in need.

Upcoming Fundraisers

9th Annual Recipe for a CURE Sunday Brunch

When: Sunday, October 15th; 11 Am – 2 PM
(The Buffalo Bills are on a bye week! You won’t even miss the game!!)

Where: Radisson Hotel Rochester Riverside (120 East Main Street)

Pricing: Adults ($50), Children 6 – 12 ($25), Children Under 6 (Free!!)

What: Please join us for the BEST Brunch in town with the BRAVEST Kid Chefs Around! We host this event in partnership with the American Culinary Federation. Their incredible and talented chefs prepare Brunch-style food stations with our amazing CURE Kid Chefs by their side. We’ll have fantastic live and silent auction items for you to bid on. This is our BIGGEST event of the year! We hope you’ll join us for our whimsical Dr. Seuss themed event.

Come Hungry. Leave Fulfilled.
Purchase your tickets here.

This Halloween bring a CURE box and also Trick-or-Treat for spare change! You can make a difference and help our families while you’re already out on Halloween! Every little bit helps!! Contact sam.corrigan@curekidscancer.com for more information or stop in the office and pickup a CURE Trick-or-Treat box anytime!

Million Penny Drive:

penny drive

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?

                                                        E-mail staff@curekidscancer.com

Start your holiday shopping early AND help CURE!
Our fundraiser will run from October 15th – November 5th

27th Annual Race With Grace 10k

Thursday, November 23rd (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.

There is an $22 pre-entry fee by November 19th, 2017, $26 November 20th-22nd, and $30 on Race Day. Fees include a hooded sweatshirt for the first 200 registrants and a HOODED L/S cotton tee for registrants 201-1000. Sizes guaranteed if registered prior to November 1st. All entry fees are non-refundable. Register online at www.RWG10k.com until Monday, November 19th at 9 PM

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

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

Jaw dropping door prizes, Food Trucks, Wine Tastings, Breweries, Live Music, Raffles, Random Giveaways, Face Painting for Kids, Braids For Girls, Lines & Designs for Boys, Games, Amazing Vendors, and Live demonstrations performed by our very own Dr.Tracy! Hoping for our community to come together have a great time and support an amazing cause! We can’t make cancer go away but we sure can “JOIN THE FIGHT” call with any questions 585-347-6944
2126 Empire Blvd, Webster, NY

SAVE THE DATE:
Thursday, December 14th @ Nosh.
Let’s. Get. Tacky.
More details to come.

It’s that time of year, wash away the salt and traces of winter all while supporting CURE!

www.causewash.com/curekidscancer

CURE is the charity of the year for the ROC City Steelers Fan Club!
Throughout the 2017-2018 football season, they will be raising money for CURE!
Be sure to go out and watch the games with them – they’d love to see some CURE families. They watch the games at:
MicGinny’s Sports Bar (2246 E River Rd) 
Their annual Tailgate Party will be held at MicGinny’s on Sunday, October 1st from 9 AM – Noon. They have great food, some awesome gift baskets to bid on and even better company! Please be sure to stop out and say hello and maybe even catch a game with the crew!


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!


Thank you for your support!

Durand Eastman Men’s League

Thank you so much to the Durand Eastman Men’s League who raised money this summer for CURE!

Paint & Sip for CURE

Thank you to MicGinny’s for hosting a Paint & Sip for CURE! Half of the proceeds were donated to CURE and we get to hang up this awesome mural in the office now! Thank you to everyone who came out to help us paint this! Feel free to stop by the office sometime to see it in person. We hope to have it installed at the end of October.

Everyone had so much fun at the Annual Morton Fun Days held on September 23rd!! Thank you so much to Morton Baptist Church who invites our families out every year for a day of apple picking, pumpkin picking, games and fun!! This year marked over 30 years the Morton Baptist Church community has been hosting CURE families.

CURE held our Annual Remembrance Service on October 1st to remember and celebrate the lives of children lost to cancer. Thank you to everyone who helped us put together such a special ceremony.

We Want To Hear From You!

We need help hanging vinyl letters in the staircase going up to our office! We do not have the resources to hang the letters high above the stair case. If you have experience doing this and can volunteer your time to help us please email sam.corrigan@curekidscancer.com.

We are currently looking for interns for the spring semester.

If you are interested please reach out to Holly Dutcher at holly.dutcher@curekidscancer.com

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


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!
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Small pocket/purse-sized calendars
  • Paper towels and toilet paper
  • 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!


Bereaved Families Corner

Remember the Basics When Coping with Loss

When faced with a life challenge or a loss it is helpful to remember the basics. This short list provides healthy coping strategies that are recommended to keep you moving during the first few days/weeks/months.

  1. Take it one hour at a time, one day at a time, if need be, one moment at a time.
  2. Get enough sleep or at least enough rest.
  3. Try and maintain some type of a normal routine.
  4. Remember that regular exercise helps relieve stress and tension.
  5. Eat a balanced diet. Limit high calorie and junk food. Drink plenty of water.
  6. Avoid using alcohol, medications or other drugs in excess or to mask the pain.
  7. Do those things and be with the those people who comfort, sustain, and recharge you.
  8. Talk to others, especially those who have lived through and survived similar experiences.
  9. Find creative ways – journal, paint, photograph, build, woodwork quilt, knit, collage or draw – to express intense feelings.
  10. Remember coping skills you have used to survive past losses. Draw upon these inner strengths again.

This full article can be found here.

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

Next meeting is November 1, 2017

From 7-8:30pm

No reservations required


ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

Next meeting is October 17, 2017

6-7:30pm

Free Parking provided by CURE

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.

Aplastic Anemia and Bone Marrow Failure Family Weekend

It’s FREE!!

When: October 20 – 22, 2017

Where: The Hole in the Wall Gang Camp (Ashford, CT) – travel assistance may be available

What: Camp activities include fishing, archery, tennis, basketball, mini-golf, cooking zone, arts and crafts, woodworking, campfire fun, stage night and more!

Who: Children between age 5 and 15 who are living with aplastic anemia or another bone marrow failure disease. Immediate family members and siblings of any age are also welcome. Up to 25 families can be hosted for the weekend.

HOW TO REGISTER: Start by completing our PRE-REGISTRATION SURVEY. Once this is complete, someone from The Hole in the Wall Gang Camp will follow up with you and provide more details about full registration.

If you have additional questions or need further assistance,

please contact Hole in the Wall by emailing admissions@holeinthewallgang.org or calling (860) 429-3444.

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 every other Wednesday at 12pm.

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.