CURE Childhood Cancer Association

January Newsletter

CURE main logo pic

A Message from the Executive Director

Happy New Year!

WHEW! This past year was packed full of events, programs, services and support. Now that the holidays have come and gone, it’s the perfect time to reflect on the past year. It has been a difficult year for our families – with 68 families hearing the devastating words “Your child has cancer” or “Your child has a chronic blood disorder”. This number is daunting. In 2016, 47 families heard those awful words. To recap the year for you all and to let you know how your advocacy and support (both through volunteering and financially) has truly helped local families facing big battles, I’ve compiled some numbers for you:

  • Number of parking passes distributed to families at Golisano Children’s Hospital and Wilmot Cancer Institute: OVER 7,300
  • Number of food vouchers distributed to families at Golisano Children’s Hospital and Wilmot Cancer Institute: Nearly 1,400
  • Number of people who RSVP’d to our Survivor’s Day Picnic: Almost 400
  • Number of visits from our Parent Advocates to families at Golisano Children’s Hospital and Wilmot Cancer Institute: Over 2,300
  • Number of text messages between our Parent Advocates and families: Just shy of 1,800
  • Number of Parents’ Night Out Events: 4
  • Number of families who attended the Holiday Party: 56
  • Number of minutes the Parent Advocates spent talking with families on the phone: Over 1,350
  • Financial assistance to help families: Over $14,000
  • Financial assistance to help families with funeral expenses: Over $4,000

As you can see, your support DOES make a difference. We couldn’t do the work we do without your support. Thank you for the opportunity to help families when they need it most. I speak for the entire Staff and Board of Directors in sending my thanks and for expressing our most sincere gratitude to you all for giving us the opportunity to change lives and help others.

Wishing you all good fortune and blessings in this new year.
Thank you for all that you do.

Spotlight On Molly

My name is Molly and I am 17. Last year at age 15, I was diagnosed with ovarian cancer, I then started treatment at 16 years old last September. This was truly the hardest thing I’ve ever had to go through; physically, emotionally, and mentally. With the help of my family, friends and my entire team of doctors at Strong Memorial Children’s Hospital, I was 100% cured and declared cancer free January of 2017. I am now a Senior in high school. I love art: drawing and painting, and I am looking at colleges to go to next year! I want to be a children’s therapist and someday want to help children through the mental state of cancer. My family and friends were my muse to get me through my treatments and I would not be here if it wasn’t for them! Cancer is no fun, but it sure feels good to take it down!! 🙂

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 (200 Westfall Road, Rochester, NY 14620) or given to Kiersten or Adella at the hospital.

Our next Parents’ Night Out event will be at Laughing Gull Chocolates! Stay tuned for updates in the coming weeks!

You can send your friends or loved ones to this amazing site https://magichour.org/

Photography is a gift that allows you to capture beautiful moments in time.  This organization matches professional photographers with those that have fought or are still fighting cancer.  The photo sessions are 100% free, and include the digital files and a set of professionally printed 5×7’s in a timeless custom box. 

 Please share the word about this organization and the wonderful work they are doing to spread some joy to those that are fighting the fight of their life. 

Upcoming Fundraisers

Presented by

 

New Year’s Resolutions tend to revolve around improving oneself and the environment around you. If your resolutions involve becoming more active in your community and helping others, CURE has opportunities for you!

We are currently in the planning stages of our 9th Annual 5k and Fun Walk which will be held on Saturday, April 28th at Lower Seneca Park. If you would like to join a committee for this event, you would be fulfilling your promise to yourself to become more active in your community AND you would be helping out a great local cause! We need help in the areas of participant recruitment, sponsor recruitment, registration, and much more! If you would like to become involved with this event and have an area that you would like to work on, please contact Sam Corrigan (sam.corrigan@curekidscancer.com)

Also, don’t forget to mark your calendars for this event and start assembling your teams! We hope to make this our biggest 5k and Fun Walk yet!


Painting with a Twist Fundraiser:

 

To benefit CURE Childhood Cancer Association

Reserve your seat here!

January 21, 2018

Henrietta Location

6 – 9 PM

Bring your own alcoholic beverages. CURE will provide some soda and snacks. (If you have a special snack you’d like to share, the more the merrier!!)

3259 S Winton Rd #104, Rochester, NY 14623

Section V Hockey:

This year’s big game will be played March 15th  at the Bill Gray’s Iceplex! We appreciate the Booster Clubs of these teams submitting ads for our program book, year after year, in support of CURE. Additionally, we appreciate the players purchasing tickets to the game, which also benefits our organization. The Senior Select Hockey Tournament recognizes the top Senior Hockey players in Section V, giving them one more opportunity to represent their high school and play a great game of hockey!

Our friends at Coredello’s Pizzeria in Chili are generously donating $2.00 to CURE from every large pizza sold between January 11 – 14 in loving memory of Lydia Tata! Stop into Coredello’s and grab a yummy pizza while also supporting our families!

Shop the Embrace the Difference collection and make a difference! $10 – $100 is donated to CURE with every purchase! Stop in at Reeds Jenns or check out the Embrace the Difference collection online

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

www.causewash.com/curekidscancer


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!

This year for the holidays, CURE was able to help 60 families! Our Staff and Parent Advocates worked diligently to gather wish lists from all of the families. We shared 25 wish lists with our friends at Anna’s Wish so they could provide an amazing holiday for these families. We provided support to 35 families through CURE and the generosity of our supporters like CarestreamHoward Hanna – PittsfordHoward Hanna Brighton OfficeSkillsoft,Compass Cycle StudioGather & GiveThe Home DepotPixos PrintFight Club of Rochester and many many others. Thank you, all of you, for making this a holiday to remember for our families. What an incredible way to end this year!


A HUGE thank you to everyone who contributed to our Holiday Heroes campaign this year. Your contributions made a difference and it is truly our honor to recognize the special people in your life.

Click here to check out this year’s edition:
2017 Holiday Heroes

A BIG thank you to our friend Cora Tuttobene, who hosted an event in October and raised money for CURE! She organized an outdoor concert in Honeoye Falls and raised over $1,500 for our families!

Thank you so much to our friends at Larry Masci Electric for helping us provide our families who were in the hospital and the whole nursing staff on 7 North a delicious meal on Christmas Eve.

We had so much fun at our Annual CURE Holiday Party!! Thank you to BENTE Local 2419 and Council 66 for hosting such a wonderful gathering for our families!

We had such a great time at our 4th Annual Tacky Sweater Party! We would like to thank our friends at Nosh for hosting and our friends at Black Button Distilling and Sage Rutty & Company, Inc. for sponsoring the event. Check out the picture of our awesome winner, Carlos, who wore the tackiest sweater!

Our friends at the Rochester Brainery and Yelp Rochester partnered together to make a difference to our families this holiday season. Yelp gathered baskets from local vendors and raffled them off, raising money for CURE in the process. We are sincerely appreciative of their efforts and partnership!
They also created an awesome video about CURE that you can watch Here

Thank you so much to Amanda, who was a CURE kid, and collected donations for CURE at her wedding!
We wish you and your husband a lifetime of happiness!

Thank you to our friends at NRG Rochester who donated the proceeds from their Annual Holiday Bake sale to CURE! They raised $1,050 that we used to purchase Wegman’s Gift cards to give families during the holiday season!

Thank you to our friends at Genetaska! They held a card party in October at Midvale Country Club and donated the proceeds to CURE!
This incredible group of women put together a wonderful event we are honored to have been a part of. Thank you!

Check out all these amazing hats that were donated to CURE by Jeremy from Hatsgiving. They donated 175 hats for our CURE families to help them stay warm in the cold winter months. Jeremy started Hatsgiving in 2012 when he was just 8 years old and since has donated over 5,771 hats to pediatric cancer patients across the country. Thank you Jeremy and Hatsgiving for all the great work you do!

Our friends at the Parish of the Holy Family held a beautiful event last month that CURE was honored to be a part of. The Glimmers of Love event encourages the community to make a donation in memory of someone and their name is included in the service. The generosity of the parish was incredible – $2,500 was donated to CURE! We thank the entire parish community for thinking of CURE and our families.

We Want To Hear From You!

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

Accepting the New Year

When we are grieving, it is hard enough to live each day as it comes. It can be daunting to face a whole new year stretching out in front of us. We may be afraid of what the new year might bring. We may worry whether or not we can handle any more challenges. Our current experience of emptiness and loneliness may make us reluctant to face a new year.

We might say to ourselves, “I used to be so busy. I used to feel so needed, so useful. Now it seems there’s nothing but empty space and empty time.” It’s bad enough to wake in the morning not sure what we’ll do with the day; what will we do with a whole year?

Longing to recover the past can sometimes make us resistance to accepting the new year. The past was where we were comfortable, where we felt safe, felt good. Grief burdens us today and we fear the new year won’t hold anything different for us. We pine for the person we miss and the precious past we shared. We think about how it was, and wish we were back there.

Approach of a new year may mean different things for different mourners. Whether we welcome, dread or ignore a new year probably depends on where we are in our grief process. The question is not whether, but how grief will show up, and how we’ll work with it.

A Learning Process

If our loss was recent, sudden or unexpected, we will most likely still feel in shock. We may feel like we’re living a bad dream or living another person’s life and be trying desperately to get back to our “old” life. The new year matters little. We get up in the morning, put one foot in front of the other, breathe and tell our story of what happened. Writing and talking about different aspects of what happened over and over may help, until we find we don’t need to tell the story in such detail anymore. Feeling a little numb or detached keeps us safe while we wake gradually to the reality that life and our world is not how we knew it or thought it would be.

Therese Rando, a noted grief therapist and author, describes grieving as a learning process. Each minute lived with our loved one taught our brain how to operate and what to expect. Each new challenge, like doing the taxes, fixing things, and going into a new year, becomes a fresh occasion to learn that our loved one isn’t here and discover what that means for us. New challenges continue, bringing fresh pain even well into the grieving process.

If we have courageously worked with our grief over time, we may look to this new year with interest and wonder what it will hold for us. We might even feel eager to throw open our door and welcome this new year. The swelling around the wound of our loss has gone down some. We find comfort and joy in knowing we did all we could and that we loved well. We were enriched by our love and now know deeper compassion for all who suffer. We recognize life is a gift to enjoy with whoever crosses our path. We want to go and do and see for both of us what we’d hoped to do together. We don’t know details, have no assurance about what’s coming, but we hope for good.

Even if we’re scared and lonely and long for the past, we can still open the door a crack to this new year.

Tips to help face the upcoming new year:

  • We begin by getting needed rest. If we’re still exhausted from caregiving or from acute grieving, we need to focus on physical recovery. We may need to talk with our doctor about how to rebuild ourselves physically.
  • We also need to give ourselves mental rest. We can replace negative thoughts with positive affirmations about ourselves. We can soothe ourselves with music, prayer, uplifting literature, tears and laughter.
  • We can notice any desires stirring within ourselves and find small practical ways to give ourselves new pleasure.
  • We can get the support we need by attending a support group, by talking with friends and family who can listen to us and share our memories.
  • We can seek spiritual support from a local minister, rabbi, priest, imam.
  • Most important, we’ll find courage to live into the future, into the new year, by living in the present, one day at a time, doing the best we can to care for ourselves and others today.

This full article can be found here.

Our most sincere condolences…

Argennys Apontemorales – December 8th

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 January 3rd, 2018

From 7-830pm

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 January 16th, 2018

6-730pm

Free Parking

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.

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.