CURE Childhood Cancer Association

April Newsletter

CURE main logo pic

A Message from the Executive Director

Did you know that April is Volunteer Appreciation Month?

CURE has existed for over 40 years in large part due to the kindness of the Rochester community. Giving back and kindness equate to more than dollars donated (although, we appreciate this form of support!!). CURE could not help the over 800 families we help every year without volunteers. Our volunteers range from one time volunteers coming to spruce up our Julie Roberts Children’s Memorial Garden to consistent volunteers like our Board of Directors. That’s right. The Board of Directors is comprised of 13 volunteers who meet monthly to discuss how to ensure CURE continues into the future, providing services to families in need. This semester, we have been fortunate enough to have interns working with us. Jenna and Megan (who have been with us all school year) and Amanda (who joined us this semester) have each taken on projects and assisted the office tremendously. If you take a look at our “About: Staff” page, you may notice some new photos of the staff. Our very talented intern from Spencerport High School, Jenna, used her photography skills to take our photos! Both Amanda and Megan, students from SUNY Brockport, have been working tirelessly on the Million Penny Drive with local schools. It is because of their hard work and perseverance that we have 11 schools signed up to participate this year. We are THRILLED! Our friend Joan lovingly writes notecards to our bereaved parents. Our dear friend Sora ensures our CURE kids feel special on their birthday. I cannot say enough about the BOOST Tutoring Program, fearlessly led by Linda Bolan. These tutors volunteer their talents and time to ensure CURE kids don’t fall behind in school. We absolutely could not put on the various events we plan for our families without the help of volunteers. The Survivor’s Day Picnic, Remembrance Service, Morton Family Fun Day, Holiday Party and next week’s Easter Egg Hunt could not happen without our wonderful, enthusiastic and caring volunteers. We have kind volunteers who stop in the office and help when they have time. We have young students, like our friends Katherine and Holly, who always remember CURE and think of us when they have time off from school – offering to help with anything we need at the time. It would be nearly impossible to plan fundraising events, like the Recipe for a CURE Sunday Brunch, without the dedication of our team of volunteers (especially Laurie Yohe). I could continue for days about the incredible volunteers we are so blessed to have and the contributions they make to our small organization…but make a BIG impact.

To each and every one of you who supports our organization, but more importantly, our families – we appreciate you! You make assisting families during their toughest times easier. YOU MAKE A DIFFERENCE! Wishing you a happy, healthy Spring – the best is yet to come.

Every single act of kindness makes a difference at CURE. I’ll leave you with a quote from Mother Theresa and a feeling of immense gratitude:

“In this life, we cannot always do great things. But we can do small things with great love.”


Image may contain: 1 person, smiling, closeupCURE is thrilled to welcome Adella Ivison to our staff as a Parent Advocate. Adella will be job sharing with Kiersten at Golisano Children’s Hospital. She will work Wednesday through Friday. She has a degree in International Business and a Minor in Spanish. She has lived in Brazil and Mexico as part of her International Studies program. She is originally from Michigan and has lived in New York for 15 years. She is the proud mother of three and has been married to her husband for 24 years. She became involved with CURE 7 years ago when her daughter was diagnosed with AML leukemia. She is very excited to be able to give back through CURE and be able to help other families through their difficult journey. Please join us in welcoming Adella!


Spotlight On James

You never think your child who has been healthy his whole life can be hit with a devastating disease but that is what happened to our 15 year old son, James last April. James came home from school one day saying he had to sit out of gym class because he was getting dizzy. We took him that day to his pediatrician and found out how seriously low his blood counts were.  James was immediately referred to Strong Memorial Hospital’s Pediatric Hematology/Oncology Unit.  After several more blood tests and a bone marrow biopsy, it was determined James had a very rare blood disorder called PNH (Paroxysmal Nocturnal Hemoglobinuria). It was a shock to all of us, especially when we learned that James needed a stem cell transplant. We didn’t have to look too far for a donor as James has an identical twin brother named Jacob. James was admitted into Strong at the end of June and immediately started his chemotherapy treatment. It was around that time we first met the Parent Advocates from CURE. Besides answering the many questions we had, they also offered support in many other ways. When James was having his worst days, the CURE Advocate always managed to get him to smile and eased his mind. After many weeks in the hospital, James was finally able to come home just before his sixteenth birthday.

James is now more than 8 months post-transplant and feels terrific. One of his passions has always been volunteering and working within the community. James remembers the day CURE came in with this big comfort bag for him with games, a word search book, cards, a blanket, pillow case, toiletries and so much more. He knew one day he would like to do something to give back. Well that day happened at the end of March when the Youth Group he belongs to held a Lenten soup supper with all the proceeds donated to CURE. This was one of the first events James has been able to take part in since his transplant and he is looking forward to many more! Despite having a tutor at the beginning of the school year, James never skipped a beat with his assignments and is on the high honor roll with distinction at his school. He is slowly getting back into all his activities and is now learning how to drive. James hopes to be off all of his maintenance medicines before his one year anniversary in July! We are truly blessed and very grateful to everyone for their support and care during James’ illness.


Bell Ringing

Congratulations Myles!!! 

On March 3rd surrounded by his parents, Myles rang the bell of hope signifying his last chemo treatment at Golisano Children’s Hospital at Strong!


Free CURE Programming and Events

Save the Date!!
 Join us for Parents Night Out!
May 18, 2017 from 6:30 – 8:00 pm.
Put your detective skills to the test
at t
he Great Escape Room!
Limited availability – first come first serve!
Please RSVP to Sam at 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.

Join us for Reading With Loretta!
Starting May 18th!
Every 1st and 3rd Thursday of the month
from 11:00 am – 12:00 pm.

Upcoming Fundraisers

8th Annual 5K and Fun Walk

Presented by The Cornerstone Group of Wells Fargo Advisors

OH THE THINGS YOU WILL SEE
IN LOWER SENECA PARK.

When: April 29, 2017

Where: Longhouse Shelter, Seneca Park

5k Run and Fun Walk kicks off at 9:30 AM

New for 2017!

Price for registration is $15.  This includes a CURE bracelet and CURE sunglasses.

Raise additional funds through donations and/or fundraising teams.  Your direct donation and those made to your fundraising page contribute to your level of reward*.

Raise: 
$30- receive a cotton t-shirt and CURE sunglasses 
$60- receive a tech t-shirt and CURE sunglasses 
$100- receive a hooded sweatshirt and CURE sunglasses

Register yourself and your team today by clicking here!

MONDAY JUNE 19, 2017 ⏐ 10AM SHOTGUN START

Victor Hills Golf Course

• 8:30AM BREAKFAST/REGISTRATION
• 10:00AM SHOTGUN START
• 3PM-5PM OPEN BAR/NETWORKING/AWARDS/AUCTION
• 6PM OFF-SITE AFTER PARTY (TBA)

EACH REGISTERED GOLFER WILL RECEIVE 18 HOLES OF GOLF, LIGHT BREAKFAST, BEVERAGE STATIONS, BBQ LUNCH ON THE COURSE, OPEN BAR, NETWORKING MIXER, GRAZING STATIONS, AUCTION AND ENTRY TO AFTER-PARTY EVENT

Farley’s Friends FOREforFOUR Charity Golf Tournament charitable partners are Causewave Community Partners, The Community Place of Greater Rochester, Inc., and CURE Childhood Cancer Association!

Don’t forget about our t-shirt contest at the 5K and Fun Walk

Get your artistic juices flowing and create a unique t-shirt design for yourself or your team. The contest is open to all participants whether you are part of a team or an individual participant. Judging and prize giveaway will be awarded at the closing of the event so make sure you stick around to see the parade of t-shirts! 

Alex and Ani Fundraising Event

Tuesday, May 9th from 5 – 8pm

15% of gross sales will be donated to CURE (excluding Charmed by Charity and gift certificates)

145 Culver Road Armory, Rochester, NY 14620

Just in time to get your Mother’s Day shopping done! 


2nd Annual Patrick Carr Memorial Golf Tournament

To register or to sponsor this event click here https://curecca.ejoinme.org/PCM2017

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

www.causewash.com/curekidscancer

SAVE THE DATE:

April 29th: 8th Annual 5k and Fun Walk

May 9th: Alex & Ani Fundraising Event: 5-8pm

June 4th: Survivors Day Picnic

June 11th: Cutting 4 A CURE

June 11th: LONGSHOTS 1ST ANNUAL & 2017 CURE CHILDHOOD CANCER GOLF TOURNAMENT IN MEMORY OF MADDOX LAWRENCE

June 19th: Fore for Four Golf Tournament

July 8th and 9th: Corn Hill Arts Festival

July 24th: 2nd Annual Patrick Carr Memorial Golf Tournament

August 5th and 6th: Park Avenue Festival

August 27th: Poker Run

September 23rd: Morton Fun Day

October 15th: 9th Annual Recipe for a CURE Sunday Brunch

Thank you for your support!

D4 Paddle Ball Tournament

We are so thankful to our friends at D4, LLC for hosting their 2nd Annual Paddle Ball Tournament benefiting CURE! It may have been cold out but everyone still had an awesome time. They raised $2,200 for CURE this year! We truly are thankful of your continued support and we are looking forward to next year!

3rd Annual Trivia Night

We had a great night at the 3rd Annual Trivia Night!

A huge thank you to our Board of Directors and their friends for raising over $8,000 for our families! 

30th Annual Senior Select Hockey Game

On March 18th, we held our 30th Annual High School Senior Select Hockey Game. We are so thankful to everyone who made this event possible. Thank you to Rochester Ice Center for generously donating the ice, a special thank you to Coach Mike Ferrari and all the Section V Hockey Coaches, to the refs who donated their time, to our volunteers, to Dave Young for keeping score and Dan Collins for announcing and to John Fitzgerald who took all of our pictures. A very special thank you to our CURE kids, Braxton and Molly for being our official puck droppers! We are excited to announce that this event raised $5,792!! Congratulations to the Hockey Class of 2017 and Good Luck!

For more pictures from the game click here

We Want To Hear From You!

We are looking for volunteers for the 5K and Fun Walk. If you are interested please sign up here. If you have any questions please email

Kim Collins at kim.collins@curekidscancer.com.

We are currently in need of committee members for our 9th Annual Recipe for a CURE Sunday Brunch.

Committee members are needed in the following areas:

*Silent Auction

*Sponsorships

*Table Captains

*Decorations

Our first committee meeting will be held on April 20th at 5:30pm at the CURE Office.

If you are interested in joining the committee please email

Kim Collins at kim.collins@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!
  • Cases of water for the 5K and Fun Walk
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Small pocket/purse-sized calendars
  • Paper towel rolls and toilet paper rolls
  • Items for teens or young adults
  • Toys for kids under 3 years old
  • Gifts for the Survivors Day Picnic, June 4th – toys for boys and girls of all ages

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

We are currently looking for interns for the summer and upcoming fall semester.

If you are interested please reach out to Kim Collins at kim.collins@curekidscancer.com or 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


Bereaved Families Corner

Dealing with the loss of a loved one is a challenge that nearly everyone will experience during his or her lifetime. While the only way to heal from a loss is with time, creating a memorial garden in honor of your loved one is an inspirational way to pay tribute to their life while giving you a quiet place to remember your loved one.

What is a memorial garden?

The beauty of memorial gardens is that there are no rules when it comes to creating this special place. What makes it significant is what it symbolizes and how it makes you feel when you visit it. It can be as small as a single tree in your yard or even a long pathway of flowers leading to a pond. Like any garden, it may depend on what kind of space you have. However, don’t be deterred if you have a small space like an apartment because you can still plant and grow beautiful and meaningful things in a space like a balcony or even indoors by a window.

How can making a memorial garden help?

According to helpguide.org, one of the most important things to keep in mind when healing from a loss is to resist the urge to suppress your feelings and to let yourself ride the waves of grief as they come and go. Since this is a painful task, creating a memorial garden will give you a peaceful place to retreat to when working through these waves of emotion. Even the very act of building and maintaining your garden will help keep the mind focused on something beautiful and symbolic while you deal with your grief in a constructive way. Once your garden is complete, you will always have a quiet place to visit, reflect and remember.

Here are some tips for creating your own memorial garden:

1) If Possible, Make It Private

Because your memorial garden will be a peaceful place for you to retreat to, you’ll want to choose an area that’s quiet and private. Since the garden will be in the comfort of your home and backyard, you’ll feel good knowing that you have a private place to visit instead of having to travel to a gravestone whenever you want to feel close to your loved one.

2) Incorporate Water

The sound of trinkling water is naturally relaxing so including a pond or a fountain in your memorial garden will make the space even more tranquil. The water will also attract a variety of birds which will bring a bit of life and beauty to the garden. Because the area will be a place that you’ll visit when you want to reflect upon your love one in peace, making this space as uplifting as possible will help you feel more comfortable.

3) Choose An Area That Gets Some Sunlight

Since you’ll be growing some kind of plant or flower in your memorial garden, you’ll want to choose a place with a good amount of sunlight so it doesn’t limit what you can plant. Your garden should be a place that makes you feel content while you remember your loved ones so feeling the warmth of sunshine will radiate some positivity into the area.

4. Let There Be Light

Include outdoor lighting such a solar lights, candles or lanterns so you can visit any time of day. Because grief comes in unpredictable waves, you’ll want to make sure that you can safely venture over to your memorial garden during the evening so incorporating a good source of lighting will help with that.

5) Incorporate Pieces Of What They Loved

Is there a special flower or plant they loved? Whether they loved music, fishing or crafting, there are so many creative ways to incorporate little pieces of who they were into the memorial garden. Not only will this make the garden more beautiful, but it will mean more to you because you’ll feel close to them while you’re among things that they loved.

6) Include Seating

During your visits, you or other visitors of the garden may want to spend an extended amount of time there so having a comfortable place to sit will help the visit feel more pleasant. If you want to make that extra special, engraving a wood bench is a great way to make your memorial garden more personalized. When placed among blooming flowers or a tall tree, you’ll always find comfort in this peaceful retreat.

7) Make It Symbolic

Consider adding symbolic details into the garden. For example, angels symbolize peace and the heavenly spirit so adding an ornament is a beautiful way to make the space more peaceful. Or if you’d rather add a different kind of life to the garden, you can include a birdfeeder to attract birds like doves which symbolize love, grace and peace.

8) Add An Engraved Rock

Since the hard, durable surface of a rock will last for an incredibly long period of time, you can feel good knowing that you’ll be able to visit this area of your memorial garden for years to come. This detail is ideal for people who live in areas that experience cold, snowy winters so while your gardens may be covered, you can simply brush off the snow whenever you want to see your loved ones name or a special quote engraved into the rock.

9) Small Space? Use A Windchime

If you love the idea of creating a memorial garden but don’t have a big amount of space to dedicate to a variety of flowers, plants or larger additions such as the wood bench, a wind chime is another beautiful idea. With every gust of wind that makes your memorial wind chime ring, you’ll think of this special person.

10) Plant Wildflowers & Forget-Me-Nots

Beautiful and bright, wildflowers and forget-me-nots are the perfect florals for memorial gardens. From the moment you plant them, they will symbolize the love and light you felt for the person who has passed. In addition, these flowers attract butterflies which are not only beautiful, but they’re symbolic of hope, growth and transcendence. If you like the idea of growing these colorful blooms, consider planting seed paper memorial favors. Created with eco-friendly materials, these products can be planted in a pot or garden to commemorate the life of a loved one who has passed. Since the act of planting the paper and growing flowers takes time, they symbolize the healing process and how although grief is a journey, the other side will be beautiful and strong.

https://www.botanicalpaperworks.com/blog/read,article/692/creating-a-memorial-garden-to-honor-remember-loved-ones

Support:

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 one of CURE’s Parent Advocates: Kiersten Kunick (585-697-4470) or Adella Ivison (585-697-4836), or call the CURE office at 585-473-0180. This service is provided free for CURE families.

ROC City Sicklers:

ROC City Sicklers Logo

The third Tuesday of each month

UR Medicine

Conference room ACF A/B

Next meeting is April 18,2017

6 – 7:30pm

Free parking provided by CURE Childhood Cancer Association

Food provided by Wegmans


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, CURE’s Parent Advocates

200 Westfall Road, Rochester 14620

Next meeting is April 5, 2017

From 7 – 8:30pm

No reservations required


Facebook Live:

Kiersten Kunick and Adella Ivison, Parent Advocates, go live on Facebook every 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 or Adella and share! kiersten.kunick@curekidscancder.com or adella.ivison@curekidscancer.com


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.