CURE Childhood Cancer Association

October Newsletter

CURE main logo pic

A note from our Executive Director

Hi there, Friends!

I’m back and caught up! I want to thank everyone for their patience while I was on maternity leave. My family and I are appreciative of the time we were able to spend together. We had a great time at Morton Family Fun Day a few weeks ago! Below is a picture of us at the event, which was wonderful!

Happy Fall! This season is a favorite for many people. It’s likely because of the cooler weather…but mostly attributed to the changing leaves. I have to admit, the leaves are beautiful in the fall (but I prefer warmer weather!). Much like the leaves changing for the season, we have experienced some changes here at CURE. I am so thrilled to introduce Bridget Sadler, our new Community Coordinator. She is a long-time supporter of CURE and is personally familiar with the services we provide to families. She’s a dynamo and has an incredible amount of energy (I’d personally like to bottle some of it up for myself). In addition to running the events here at CURE, she is also the JV Women’s Field Hockey Coach at Irondequoit High School. I know, how does she do it all?! I’m excited for all of you to get to know her as she acclimates here. Another exciting announcement is that our Parent Advocate, Adella, is joining the staff here at the office as our Program Coordinator. (Don’t worry, families, she will be at the hospital on Fridays still and even better – you’ll see her at programming events). This change is positive for CURE because it will enhance the relationship and communication between the hospital and the staff here at CURE. Adella is working on new programming and enhancing our current programming, so I can’t WAIT for you to see what is coming!!

As September closes, I want to thank everyone who offered support and advocacy for Childhood Cancer Awareness Month and Sickle Cell Disease Awareness Month. The visual representations of support mean so much to our families – letting them know they are not alone. We, the Rochester Community (and beyond!), are there for them and will provide support however we can.

Thank you to everyone who has been a friend to our organization. I look forward to seeing many of you at our 10th Annual Recipe for a CURE Sunday Brunch. Tickets are still available!

Happy Fall Ya’ll!!

Spotlight On….

Hi! I’m Emma. Last winter I was diagnosed with Embryonal Rhabdomyosarcoma, which is a type of muscle cancer. I am now getting chemotherapy treatments and just recently finished the first part of radiation. I just turned twelve and have started seventh grade. When I am not in the hospital, I love hanging out with my friends, drawing, swimming, playing soccer, dancing and going to school.

Remember that you can’t choose to have treatments, and there are some things you can’t choose, but you can choose to have a positive attitude about it.

For everyone who is fighting cancer, remember to keep fighting and stay strong!

End of Chemo Bell Ringings

A huge congratulations to our friends who rang the End of Chemo Bell this month:

Casey
Paityn
Angeline
Emilia

Last month, CURE donated $5,000 to the Department of Pediatric Hematology/Oncology Fellowship Research Program.  In attendance for the check presentation was Dr. Mullen (Chief of Pediatric Hematology/Oncology), Dr. Brophy (Chief of Pediatrics), Holly Dutcher (Executive Director at CURE), and Adella Ivison (Program Coordinator/Parent Advocate).  We are proud to have such a amazing program here in Rochester, and CURE is committed to supporting this research.  We are very lucky, and appreciate the partnership we have with the Golisano Children’s Hospital at Strong, and look forward to continuing this wonderful relationship.

Free CURE Programming and Events

Join us for our next Parents Night Out!!

Friday, October 19th 7pm-9pm

VerHulst Haunted Hayride
Cobble Creek Farm
5161 Ridge Road West

Spencerport, NY 14559

Stay after the hayride for some yummy donuts and apple cider!  Limited spots available – first come first served.  Please contact Adella.ivison@curekidscancer.com with questions and RSVP’s!

Happy Halloween!! 

While out trick or treating, don’t forget to stop by the CURE office October 31st 9am-6pm!

We can’t wait to see your best costume.  Remember to bring your goody bag for yummy treats!

Thank you to our wonderful friends at the Morton Baptist Church for an amazing Morton Family Fun Day again this year!  For over 25 years, Morton Baptist Church has generously hosted our CURE families, as they enjoy lunch, wagon rides, apple picking, wagon and pony rides, and so much more!

Thank You for Your Support!


Thank you so much to County Executive Cheryl Dinolfo for inviting us to receive the Monroe County Proclamation for Childhood Cancer Awareness Month!

Thank you to Irondequoit Town Supervisor Dave Seeley for proclaiming September as Childhood Cancer Awareness Month, and for the Irondequoit Town Hall for going gold this month!

Thank you to Kodak, Ridge Culver Fire Department, Town of Irondequoit, and the City of Rochester for going gold this September in support of Childhood Cancer Awareness Month!

Thank you to Irondequoit Field Hockey for hosting their 3rd Annual Childhood Cancer Awareness Game and raising $800!

Thank you to all the amazing restaurants that created CUSTOM mac & cheese dishes for September!  $1 was donated to us for every mac & cheese dish sold!

  Thank you to:

Steadfast (200 East Avenue)

The Full Belly Deli (1225 Jefferson Road)

585 Rockin’ Burger Bar (250 Pixley Road)

Dogtown (691 Monroe Avenue)

Shamrock Jack’s (4554 Culver Road

Clutch (3208 Latta Road)

The Point (800 East State Street, Olean, NY)

Upcoming Fundraisers

Join us Sunday, October 14th at the Rochester Riverside Hotel for our 10th Annual Recipe for a CURE Sunday Brunch presented by Yokohama Tire!  You won’t want to miss out on the BEST Brunch in town!

To purchase tickets, please click here.

Stay Tuned:
Tacky Sweater Party!
Let’s. Get. Tacky.

More Info Coming Soon

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 bridget.sadler@curekidscancer.com for more information, or stop in the office and pickup a CURE Trick-or-Treat box anytime!

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


Thursday, November 22nd (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, 2018, $26 November 20th & 21st, and $30 on Race Day. Fees include a 1/4 zip long sleeve pullover tech shirt for the first 200 registrants and a long sleeve 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 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!

Please support the Cure Childhood Cancer Association SHEETS FUNDRAISER and get 1500 Thread Count Soft PeachSkinSheets for $54.95 (instead of $79.95) in Any Color and Any Regular Size. You’ll save $25 per set PLUS another $20 per sheet set sold will go to support our CURE Childhood Cancer Association. Visit www.PeachSkinSheets.com and use our discount promo code CURE on all $79.95 sets purchased between  October 14th, 2018 – October 28th, 2018 to redeem your special price.

Online orders are shipped out within a few days, so there is no need to wait for your sheets until the drive ends. Please note that fundraiser pricing cannot be combined with other promo codes, discounts, or specials including Colors of the Month pricing. Thanks for your support, and please share!

Our friends at Awareness Coffee are helping to spread awareness about Pediatric Cancer with their coffee made from a specialty bean out of Peru, and roasted to perfection with subtle floral and chocolate notes.

A portion of proceeds will be donated to CURE, Golisano Children’s Hospital and Camp Good Days – your choice at checkout!

Buy the coffee here!

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!

We Want To Hear From You!

Calling all friends of CURE!
We are putting together our silent auction for the 10th Annual Recipe for a CURE Sunday Brunch and we could use your help!

We need help making phone calls to follow up with businesses we sent letters to
AND
We need donations of pre-assembled baskets! Themed baskets always go over well with our crowd!

To learn more about how you can help, contact Bridget at:
bridget.sadler@curekidscancer.com

Join Our Team!

We are currently looking for interns for Spring ’19!!

If you are interested, please email Adella.Ivison@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 Adella.Ivison@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
  • Weighted blankets
  • Essential oils
  • Mini diffusers
  • 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

14 Tips on How to Live and Learn From Great Loss
By Annalisa Barbieri

1. Never avoid someone who has been bereaved. It’s confusing and hurtful. Texts, emails and letters are all acceptable – it’s the contact that matters. Grief can make you feel scared and alone. Saying “I’m sorry” is enough if you can’t think of anything else. But if you have any memories of the person who has died they will be most welcome as, once someone has gone, there are no new memories unless someone shares theirs with you. Even if you have written or texted, always say something again when you actually see the person.

2. Similar bereavement stories can be really helpful; don’t be afraid to share them if you, too, have experienced such a loss. In the early days of grief, it’s important to know that it’s survivable, that you will laugh again, that all happiness has not gone from your life – someone who has been there and done that can be a lifeline.

3. Never compare the loss of a significant loved one to the loss of a pet. And never tell someone how they’re feeling, because grief is incredibly individual.

4. Don’t stop someone crying. Even saying “don’t cry”, meant helpfully, can seem as if you are shutting them down. It’s OK to be silent while someone sobs, just give them a reassuring, gentle touch to let them know you are there. Tears are useful to rid the body of stress hormones. It’s also OK if someone doesn’t cry – everyone processes grief differently.

5. Grief lasts way beyond the delivery of the news. Saying you’re sorry, and then never mentioning the death again is not a good idea, unless the bereaved person has asked you expressly to do this. Send regular missives just asking how someone is. If you call, regular, shorter phone calls to check in on someone are better than great lengthy ones. Grief can take up most of your brain hard-drive and concentrating can be difficult. If you’re not sure if the person wants to talk about the deceased, saying something like “how are you feeling about [name]?” is a good opener. No one likes to think the dead person is gone forever, never to be mentioned again.

6. The shock of the first few days and weeks can make it hard to do everyday tasks. Eating can be difficult. If you want to cook for someone, tiny, tasty meals can be really useful rather than massive ones. Opening post and dealing with forms can seem an impossible task even for the most previously capable – ask if you can help with admin.

7. Offer to go with someone to sign the death certificate. It usually has to be a close member of the family who does it, and it needs to be done very soon after the death. It’s an incredibly hard thing to do. Make sure they have all the information needed, because once a death certificate is issued, it cannot be altered. Factor in time for a walk and a talk afterwards.

8. Ask if you can go to the funeral. It can be incredibly comforting to know that there are lots of people to see off a loved one.

9. Don’t make it about religion unless you are sure of the person’s beliefs and, even then, be careful. Saying things such as: “They’re in a better place now,” is rarely helpful. Ditto saying: “They were a good age, though.” It’s always too young to lose someone you love.

10. Don’t be afraid to make the bereaved person laugh. Tell them about your day or “silly things” (once you’ve checked in on them) – the minutiae of other people’s lives can be really comforting and momentarily distracting.

11. Save the flowers for three months after the bereavement, when everyone else has fallen away and it seems everyone has forgotten. The bereaved person will still be grieving. It’s getting back to ordinary life that can hurt the most.

12. You won’t make the grieving person cry by mentioning the dead person unless the tears were there anyway. Don’t let fear hold you back.

13. Make a note of landmarks – anniversaries, birthdays, etc. Grief seems more raw on these days and your friend may need extra support.

14. Remind them that bereavement counselling doesn’t have to be taken in the first few months. In fact, many people can’t handle it so soon after a death, but it can be incredibly beneficial even months or years later.

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

From 7:00pm-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

6:00pm-7:30pm

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 – 8:00pm 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.

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.

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