CURE Childhood Cancer Association

September Newsletter

CURE main logo pic

A Message from the Executive Director

Do you remember where you were five years ago? Here at CURE, we gained an employee, an advocate and a friend. Kiersten Kunick joined the CURE staff in August 2012 as the Program Coordinator. Kiersten was tasked with planning the free programming for CURE families and with creating the monthly newsletter…and like many non-profit employees, “other duties as assigned.” These duties can be anything from organizing the storage space in the downstairs part of the office to contacting businesses about donations to attending events on evenings and weekends…the list can go on and on and on. When Kiersten joined the staff in 2012 as the mom of a long-term survivor, she did not know that her path would eventually lead her to moving into the role as one of CURE’s Parent Advocates at the hospital. But here she is, five years later. Families at the hospital will know her by her bright smile and blonde hair. She’s always willing to help and do what she can for families. The hospital staff will know her by the treats she randomly will bring in to surprise them with. We’ve seen growth in the Parent Advocate program and the support that is provided to families partially due to Kiersten’s passion to help families who hear those words “Your child has cancer” or “Your child has a chronic blood disorder.” We truly appreciate everything Kiersten has done and continues to do for us. Will you join us in congratulating Kiersten on celebrating five years here and thanking her for her continued support of our families?

I also wouldn’t be doing my job properly if I didn’t plug that September is childhood cancer awareness month and sickle cell awareness month. Don’t forget to show your support through weaving gold or red into your life during September! Send photos to our office (staff@curekidscancer.com) of your business or home showing their support and we will include on our social media and in a special edition of the newsletter in October! Use #GOLDforCUREkids or #REDforCUREkids when posting on social media.

Spotlight On Sadie

This is eight year old Sadie. She was diagnosed with a brain tumor, a germinoma, on May 1, 2017, after experiencing significant, rapid vision loss. She spent almost three weeks in the hospital initially, then returned for four inpatient chemo treatments over the summer. Sadie is currently receiving radiation treatment until the end of September. Even though the tumor caused permanent vision impairment and several health issues that need to be managed for the rest of her life, the tumor is essentially gone! Sadie is winning this fight!

Our family has been so thankful for the CURE family. We first met the Parent Advocates during our initial hospital stay and were blown away by the care package they gave us – fun items to cheer Sadie up (Her favorite comfy blanket was among the items!) and practical things like toiletries, meal vouchers, and parking passes. It was a blessing to never worry about paying for those necessities. Since then, it’s been comforting to connect with other CURE families who know this journey, to feel supported by the CURE staff, and to be on the receiving end from our generous Rochester community through donations that help meet practical needs, provide fun, and most importantly, bring a smile to our daughter’s face. Your concern and provision for us, strangers facing one of the hardest times in our lives, is humbling. We are so thankful for YOU!

Meet Sadie this October as one of our Kid Chefs at the 9th Annual Recipe for a CURE Sunday Brunch!

Bell Ringing!!

Congratulations James who rang the bell on August 30th surrounded by his family!
Golisano Children’s Hospital has a video of James ringing the bell. See it here.

Meet Shelly!

Please welcome Shelly to the CURE team as our new Community Coordinator! Shelly joined CURE on June 4th at our Survivor’s Day Picnic!  Shelly is a Rochester native and graduate of St. John Fisher College and brings over fifteen years of fundraising and marketing experience.  She has worked previously with Visiting Nurse Service, Easter Seals of Western & Central Pennsylvania and N2 Publishing.  In her spare time she likes to bake, scrapbook and spend time with family.  Shelly lives in West Irondequoit with her husband and two children.


We need your help!

Has CURE impacted your life and helped you throughout your childhood cancer or chronic blood disorder diagnosis and treatment? WE WANT TO HEAR FROM YOU!! Please send a photo of you or your family member(s) holding a sign that says “Thank you” to Holly Dutcher (holly.dutcher@curekidscancer.com). We are also in search of family members to come to the office the first week of October to film “thank you” messages and testimonials. The video will be featured at the Recipe for a CURE Sunday Brunch and on our social media accounts. The photos will be used on our social media accounts, at the Brunch and in some of our mailing campaigns. Please share with us how CURE has helped you. Our volunteers want to hear from you! Our donors want to know! Please help us share our story with the community. We appreciate your support!!

Free CURE Programming and Events


Scare Childhood Cancer Away!

THIS Saturday, join our friends at the Greece Home Depot from 10 – 12 to make scarecrows to decorate your house with
for childhood cancer awareness month.
RSVP is requested to Sam Corrigan ASAP (sam.corrigan@curekidscancer.com)


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 – 7:00 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!

SAVE the DATE

Roc City Sicklers 3rd Annual Family Picnic

September 9, 2017

11-2:00pm

Genesee Valley Field House

RAIN or SHINE

PLEASE RSVP to Gladys_magee@urmc.rochester.edu

Seeking volunteers and event coordinators

Phone:  585-275-0798

Fax:  585-273-1039

Attention CURE families! Stop in the office anytime before you head back to school and pick up draw string backpacks and lunch boxes filled with back to school essentials!

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.


We are in search of some great silent auction baskets to auction off at our 9th Annual Recipe for a CURE Sunday brunch. Themed baskets are great! Some ideas include:

Baking Basket
Fishing Basket
Mimosa Basket
Bloody Mary Basket
Lego Basket
Princess Basket
Trolls Basket
Lottery Ticket Basket
Gardening Basket
Date Night Basket

The sky’s the limit! We would appreciate all donations by September 30th. We can arrange pick up if you contact the CURE office!


Paint & Sip for CURE!
Wednesday, September 20th
6 PM – 9 PM
MicGinny’s (2246 East River Road)
The painting for the mural is below:

In celebration of Childhood Cancer Awareness Month and Sickle Cell Disease Awareness Month, we are hosting an event to create a mural for the CURE office! $15 from every purchase will be donated to CURE!

You will not be able to take the painting home.
Tickets must be purchased ahead of time and WILL NOT be sold at the door.

Each painter will be painting a small canvas, which will then be donated to CURE for our mural at the office.

Tickets are limited and can be purchased here: https://curecca.ejoinme.org/PaintAndSip2017


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!

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!




Our friends at Avian Salon and Spa are going to be hosting a fundraising event for CURE
on Sunday, November 4th. Keep the date open. This is one event you won’t want to miss!


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!

Thank you for your support!

18th Annual Motorcycle Poker Run

Thank you so much to everyone who came out to Rush Creekside Inn and participated in the 18th Annual Motorcycle Poker Run!! We raised over $5,000 for CURE with your support!!

Thank you to our friends at MicGinny’s who held their Summer Customer Appreciation Party – complete with a dunk tank. All the proceeds from the dunk tank were donated to CURE!!

Thank you to the volunteers who came out for the U of R Annual Wilson Day! They spent the day at CURE gardening, painting and helping organize the office!

Thank you to the Field Hockey teams of U of R and Nazareth who had their annual game to benefit CURE!! We always appreciate the support from local colleges!!

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.

Volunteers needed for an RIT capstone project. The theme of the project is to tell a story about trauma to raise awareness about childhood illness through photography and video. The class is looking for patients who would be open to sharing their story. What that would mean is talking to the child, family and possibly doctors. They would follow the child through their journey, documenting with photos and video. The project would run from September through the end of November, ending with a show at RIT’s gallery. If this is something you would be interested in doing please email staff@curekidscancer.com

We are currently looking for interns for the upcoming fall 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 the holidays

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


Bereaved Families Corner

Getting Through the First Anniversary of Your Loved One’s Death

You have gotten through one year of those “awful firsts.” For example, your first birthday without your loved one being present, or the first Thanksgiving, Mother’s Day, Father’s Day, Valentine’s Day, your wedding anniversary, or some special day that was unique for both of you. Getting through the first year is hard, and each of these first occasions may bring up the sadness of living without your loved one. After these special days have passed, you may feel that the worst is behind you. But these feelings may continue to arise in future years on special days.

You cannot know what is in store for you during your grief journey. It is different for each of us. After making it through the “year of firsts,” you begin to see and know that you will survive. You made it through the funeral or memorial service, read all the condolence notes, and took a flood of calls. Then the quiet times settled in, when the calls and the notes stop coming, and the visits from well-wishers are fewer and farther apart. You have faced some of the difficult milestones. You have gotten this far with courage and perseverance. Now you may be asking yourself, “Isn’t this enough?” Unfortunately, grieving does not “turn off” after one year. Time does not erase the past, but it does provide the space to think about your loved one, heal from the loss, and find meaning. Anniversaries and other reminders, although painful at first, do become easier. These important dates can become opportunities to revisit the happy memories that made your loved one special, and to create memorial traditions.

It may be helpful to be prepared for the first anniversary of your loved one’s death. With the first anniversary of your loved one’s death on the horizon, it may be helpful for you to keep in mind that your grief may return with intensity. There are no hard and fast rules regarding grieving, and not everyone will experience intense grief at the anniversary of the death of a loved one. Yet it may be helpful to be prepared for what grief counselors refer to as “anniversary grief.” The anniversary of the death of your loved one can be a powerful reminder of your loss. It can be a reminder of all those special days that you had with your loved one. It may also bring up memories of unresolved issues or conflicts. Before, during, and after the first anniversary of your loved one’s death, you and your family and friends may experience a reawakening of the sadness, emptiness, and pain that you experienced when your loved one died. It is not unusual for people to experience behavioral changes for several weeks before and after an anniversary. Withdrawal, angry outbursts, crying spells, overwhelming sadness, lack of attention to detail, loss of interest in school or work activities are fairly common. You may be wondering, “How will I deal with it? If the stress and sadness today is this bad, how horrible will I feel on the actual date?” You can get through this anniversary, and heal from experiencing it. Being prepared for the anniversary, and being open to the feelings the event brings, can be a healing opportunity for both you and your family. Here are some suggestions for how to approach the first year anniversary experience:

Plan for the anniversary. It may be helpful to know that many people find that the anticipation of the anniversary day can be worse than the actual day. As you anticipate the anniversary, you can bring comfort and healing into this day. Plan what you are going to do ahead of time, even if you plan to be alone, and set yourself up for a “good day.” Let your friends and relatives know in advance what your needs are and how they may be able to help.

You can celebrate the life of your loved one. The first anniversary of the death is a special day for recognizing your loss. You have not only lost the presence of your loved one, but all of their gifts: the laughter, the love, the shared past and qualities you treasured. Perhaps you are asking yourself how you can celebrate the life of your loved one on the death anniversary. One family took balloons to the high school track where their son had competed, and released them, each with a written personal message. One widow picnicked by the lake where she sprinkled her husband’s ashes. Another family had an annual dinner in memory of their daughter. Creating a positive ritual, either alone or shared with others, can give support, healing and meaning to the death anniversary.

You can celebrate what you have accomplished together. The death anniversary is also a day for acknowledging the living. This certainly includes you. The last 12 months have been demanding. You have handled your loss in the best way you could in order to survive. Take time to acknowledge the hard journey you’ve been on. Then look ahead to the new life you are creating for yourself. Do something special for yourself – perhaps schedule a massage, a special dinner or a trip to a nurturing place.

Handle your memories with care. You can choose which parts of the life you shared that you wish to keep, and which parts you want to leave behind. The happiness you experienced with your loved one belongs to you forever. Hold on to those
rich memories, and give thanks for the life of the person you’ve lost. It may be easier to cope with memories you consciously choose to keep, rather than to have them emerge when you are not prepared to cope with them. Perhaps you may decide to create a special place to honor your treasured memories, using photos, mementos and a candle. Journaling your memories will also help you in the healing process.

Letting go doesn’t mean forgetting. Letting go of what used to be is not being disloyal, and it does not mean you have forgotten your loved one. A part of that person will remain within you always. Letting go means leaving behind the sorrow and pain of grief and choosing to go on. It means you can take with you only those memories and experiences that enhance your ability to grow and expand your capacity for happiness.

Plan for special support. It may be helpful to join a support group before and after the death anniversary of your loved one. Your local hospice will have support groups that you are welcome to join. Also, if you are accustomed to the Internet, there are special support groups suited to your exact needs. You may feel that you will never be finished with grief after the loss of your loved one. Feelings of grief may resurface during many special days for the rest of your life. Each time you will face your sadness on new terms, but may notice that it doesn’t seem as intense or difficult. Hopefully, you will be able to affirm how much you have grown and healed in the ongoing journey of your grief.

This full article can be found here.

Our most sincere condolences…

Angel Cabanmunoz August 14th

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 September 6, 2017

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 September 19, 2017

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.

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.