CURE Childhood
Cancer Association
Newsletter
  May 2015
In This Issue
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Focus On...Sam Gigliotta

  

Sam Gigliotta is a 6 year old dynamo! He loves swimming and playing soccer and loves to run. That he just needs to go and run. He also adores his legos. He is methodical about his building while his brother, John, age 9,is more about creating something cool. Sam's mom confesses that while Sam is a really happy kid, he does not enjoy his chore of feeding their dog, Madden, a golden doodle. A typical kid for sure, but one thing that is not typical is Sam is a cancer survivor. Sam was diagnosed with Acute Lymphoblastic Leukemia, or ALL, on February 11, 2013.


 

While Sam has had a tough road and spent a lot of time in the hospital, he has maintained his great sense of humor. His mom says he is really funny and during his visits to the hospital when he was in inpatient, he would hide plastic bugs or rubber snakes around and wait for the nurses or doctors to find them. He would hide bugs on keyboards or put a rubber snake in his shirt so the doctor would find it when they would look to check his port. He thought their reactions were so fun! And one of the great parts of the hospital for Sam was the shift changes and he could pull his pranks all over again. It made his time in the hospital so much more fun! Mom, Jackie, says the doctors and nurses were such great sports!

 

When Sam was first diagnosed with ALL, he told Dr. Korones that when he grew up he wanted to be a doctor so that he could help Dr. Korones with all of the kids he needed to see. Now, Sam wants to be a Police officer during the week and a professional football player on the weekends.But who knows where Sam will end up, after all, one of his other favorite activities is looking at a world globe with his brother and asking each other geography questions.Sam knows all the US capitals and many of the world capitals. Not bad for a 6 year old!

 

Sam started half day Kindergarten this February because he was immune suppressed and they did not want Sam to be in and out of school until he was healthy enough to attend full time. Jackie is so pleased with this decision because Sam is really flourishing now. He gets along great with his classmates and every day runs to his mom after school to tell her the new fun thing they did or learned that day,

 

Sam, along with his mom and dad, Jackie and Carl and his brother John recently participated in CURE's 6th Annual 5K Run and Fun Walk at Seneca Park on April 27, 2015. Their team, Sam's Running Giants, comprised of extended family and friends, raised over $2600 for CURE! We celebrate them and thank them for their selflessness in giving back to their community even while Sam is still in treatment! Go Sam!

CURE's Volunteer of the Month

Alicia Thompson

 

Alicia Thompson came to CURE offering us a unique opportunity; to commemorate a child's life in a piece of jewelry. Alicia is the the owner and designer of Smallprint Rochester. It is a line of jewelry that captures a child's fingerprint, hand print, footprint or artwork in pure silver pendants, necklaces or bracelets, cuff links or key rings. Alicia partnered with CURE to offer a charm to bereaved families of their child's fingerprint. She takes the time to sit with the families, get to know themand meticulously make sure that each piece is absolutely perfect for them. She also offers 15% of her sales to CURE to support our families. But that's not all! Alicia recently was an active participant CURE's 5K Run and Fun Walk Committee. Her willingness to not only give back to our families financially through donating a portion of her sales to CURE, but to also advocate for our organization is sincerely appreciated and makes a BIG difference! We celebrate and thank Alicia for her dedication to our organization! Be sure to visit Smallprint Rochester on Facebook to view all of her amazing offerings.

 

CURE is so fortunate to have so many committed volunteers that work countless hours donating their time and services. This work saves CURE a great deal of money and allows us to continue to provide the highest quality services and programs to our CURE family. We hope after you read about some of our volunteers, you too will consider donating your time. (If so, please contact Kiersten Kunick, Director of Programs at [email protected] or complete our online form.) 

A Message From the Director

A note from the desk of CURE's Board Chair, Wendy Carney...


 

Dear CURE family members and friends,

 

I hope you all enjoyed our brief glimpse into a beautiful spring, before the snow decided to come back, but I checked and sunny days are ahead for us. We've had a very busy April, several events, our annual 5K Walk and Run, and ramping up preparation for our summer and fall events. I'd like to thank our volunteers, the CURE staff, and two local Alex and Ani stores for making our April a successful fundraising month for us.

 

A few months ago, it was noted in our newsletter that we would be honoring Dr. David Korones as our Hometown Hero at our annual golf tournament. We all felt that given his heart is with the children and families; we would change the venue and honor him at our 7th Annual Recipe for a CURE brunch instead.  Everyone is VERY excited about this change in plans!  If you would like to assist with our 7th Annual Recipe for a CURE, it's not too early to get involved as committees are already being formed and underway. Please contact [email protected] for volunteer sign up or to see where you can be of assistance.Our late spring and early summer is going to be an active time as well. We have quite a few exciting events coming up over the next month or so as well.  On May 9, 2015 we will join Fairport High at the annual Cross Out Cancer for the Blake Cognata Memorial Lacrosse Games. Please join us, along with his parents, as we honor Blake's memory at this great event with three games throughout the day.

 

On June 7, 2015 we will hold our annual Survivor's Day Picnic more details to follow.  If you would like to be involved, please contact [email protected] for volunteer sign up or to see where you can be of assistance.  On June 14, 2015 we will be holding our annual Cutting 4 A CURE, details are on our website or you can contact [email protected] .

Last, but certainly not least, I would really like to send a heartfelt, HUGE thank you to the amazing CURE staff!   They are the hardest working employees ever and they have run things very smoothly over the past month. 


Thank you for all you do for CURE!

 

My warmest regards,

 

Wendy Carney, Chairman of the Board

CURE's Annual Survivors Day Picnic

Sunday June 7, 2015, 1-4pm


 

Date Sunday June 7, 2015

Location: Genesee Valley Park Roundhouse Shelter

Time: 1:00PM - 4:00PM

Who's Invited: CURE kids living and surviving a diagnosis of cancer or blood disorder and their immediate families. 


 

There will be lunch, music, dancing, entertainment, activities, prizes and more!


 

This event is free but you must register by Friday, May 15, 2015. To RSVP to this event, there is an easy online registration. 

Sign up now byclicking here 

You can also contact Kiersten Kunick at [email protected] or by calling the office at 585-473-0180 x202.  Please remember to give the Survivor's name, the number of adults and children attending and please let us know if you will require handicap parking.

 

Volunteers are needed for this event!

 

To sign up to volunteer, please contact Kiersten Kunick@ [email protected] or by calling the office at 585-473-0180 x202

You're A Star In Our Eyes
St. John Fisher Pharmacy Students


Students from St. John Fisher College School of Pharmacy spent a day at CURE during the school's Day of Caring. The young ladies helped us clean, organize and help with office work while they were at the office for the day.Thanks to these wonderful young ladies for doing their part for CURE!
 


 

T b u r g  T a k e s  o n  C a n c e r


 

Here is a picture of Jeremiah Draudt with his mom Shelly and dad James. We would like to thank the TBurg folks who granted Jeremiah an IPad to help him pass the time and to keep him on track with his studies while on treatment. Tburg Takes on Pediatric Cancer.  It's in Trumansburg, NY. We love to see smiles like that!


 


 

Blake Cognata Memorial Cross Out Cancer Lacrosse Games, Saturday, May 9, 2015



 

In 2013, Fairport senior Blake Cognata lost his battle with Ewing's Sarcoma, a rare cancer. The Fairport High School football and lacrosse player died just before his eighteenth birthday, but the lacrosse communities have continued to commit themselves to insure that his memory will live on.This year, Fairport will host a day of games to remember Blake and help to support the programs of 

CURE Childhood Cancer Association by charging a two dollar admission.

The games will feature the visiting Canandaigua Braves against the Fairport Red Raiders. The featured, Varsity game will start at 1:30 pm

Cutting 4 - A CURE Crafters and Vendors Needed


 

Crafters and Vendors wanted! We are recruiting vendors and crafters for the 4th Annual Cutting 4 A CURE event taking place on Sunday, June 14th! Vendors will be at Cheveux Salon (3180 Latta Road, Greece) from 10 AM - 3PM. If you are interested, please visit: https://curecca.ejoinme.org/Cutting4ACURE2015 for more information. Vendors that have already registered are listed, so please do not register if you represent a company that is already on board to come!

Stay tuned for more information about this fun event where 100% of the proceeds are donated to CURE!

Our Sincere Sympathy 
We  o f f e r  o u r  s i n c e r e   s y m p a t h y  t o  t h e  f a m i l y  a n d  f r i e n d s  o f :


 

Hayli Hough April 4, 2015

CURE's Bereavement Group News
Education Program and Brick Laying Ceremony


 

On Wednesday, June 17, 2015 at 6 pm, CURE will be holding a brick laying ceremony for those families who have recently lost a child to cancer. At this ceremony we will place the memorial bricks in the Julie Roberts Memorial Garden. Immediately following the ceremony we will have light refreshments.


 

At 7 pm on Wednesday, June 17, 2015 CURE will be hosting an educational program hosted by grief loss specialist, PegDeBaise. At this program, Peg will be discussing the "The Loss of a Child and Its Impact on Families". We request reservations for this Educational Program by Tuesday, June 16. Please contact Kiersten Kunick at [email protected] or at 585-473-0180 to reserve your place for this program. This program is free to CURE families.


 

Families are welcome to attend one or both events.

Forever Changed
The Bereavement Families Corner


 

25 Things Not To Say To A Grieving Parent...

By Grieving Mothers (Notes) on Monday, June 27, 2011 at 7:46 pm


 

As I said earlier, here is an article I wrote about the 25 Things Not To Say To A Grieving Parent.  I hope the suggestions are helpful...

 

The subject of grief can be studied but the experience must be learned.  Attending a Grief 101 class may educate a student about the mechanics of grief but it will never be able to explain the experience.  No bereaved parent will discover a manual to train them how to grieve as each individual's grief journey will be experienced differently since there is no normal in grief patterns.  Even less often we are trained in the skills of supporting a parent who has experienced the death of their child.

 

Due to the level of trauma, individual fear, lack of social understanding and society's phobia about and denial of death, most people do not know how to support another human being in grief.  Parental bereavement is a life experience that cannot be conceptualized without first hand exposure.  Therefore, friends, family, coworkers and others comforting the bereaved parent are at a significant disadvantage in knowing how to effectively support their loss.  Although there is no right comment to articulate to the bereaved parent, it is well known what comments are damaging to those who are suffering this life changing devastation.

 

The following is a list of some of the most common statements expressed to bereaved parents, that, unbeknownst to the supporter, are extremely distressing for that bereaved parent to hear.


 

To read the remainder of this article, click here

Sickle Cell Evening Group 

New date and location! 

 

The Sickle Cell Group will be meeting on May 19th, 2015

 

The group will meet third Tuesday of every month at Strong Memorial Hospital-1st Floor Social Work Conference Room
601 Elmwood Avenue, Rochester, NY 14624

To view the flyer, click here

 

For more information contact them at [email protected] 

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!
  • Gift cards for Wegmans, Tops, Wal-Mart, Target and gas cards
  • Lego kits, stickers
  • Gifts for boys
  • manicure sets/ nail clippers
  • Items for teens or young adults
We ask that all items be new and recently purchased.  Thank you!
CURE Resources

 

Have you checked out our website recently? There are a number of resources that can be of help to families. Everything from Explaining Cancer to Children, Sibling Support, Financial Support and even College Scholarship Opportunities.  You can go to our website at curekidscancer.com  and click on the Resources tab or you can click here to be taken directly to the  resources page.

Community Sharing Hope Picnic

In honor of Brain Tumor Awareness Month


Questions? Contact oncology social workers Barbara Guttman, (585) 275-4631or Jade Giesy, (585) 273-4970.
When: 5-7 p.m., Thursday, May 7, 2015
Where: Kings Bend Park, 170 W. Jefferson Road, Pittsford 


Join us rain or shine! We have a heated lodge.
Dinner and entertainment will be provided 

 

To see invitation, click here

To view map of location, click here

Keeping Tabs on Cancer with Hailey

 

CURE has decided to support Hailey in her quest to collect pop tabs and has started a program called "Keeping Tabs on Cancer with Hailey". If you would like to participate, you can collect pop tabs off of aluminum cans and can even ask if your local school, girl scout or boy scout troop or even place of work would like to participate. It doesn't cost anything to you; all it takes is just a few seconds to pop the tab off your can. You can either drop the tabs off at the CURE office, ask us to pick them up (if there is a large number) or take them to your local recycling center and pop the check in the mail to CURE. Every little bit helps in support of our families and even this small act can add up. If you would like, you can download and print this flyer to accompany your collection container. Hailey and CURE thanks you!

The Yarne Source in Pittsford will be collecting tabs. If you would prefer to drop your tabs there, they will be happy to get them to CURE!

Community Resources

TouchStream

 

TouchStream, is a tablet-based monitoring system that helps improve care coordination across multiple caregivers and ensures that your loved-one's essential needs are met.  The tablet presents an organized view of each day, encouraging important daily activities, tracking whether they are done and providing verbal reminders as necessary.  The system also provides assistance managing medications or personal care tasks and can track health statistics like weight, blood pressure and blood glucose using optional wireless health devices.  Family caregivers gain peace of mind knowing that they will receive alerts when essential activities are missed or health readings are out of the normal range. To learn more you can visit their website: www.touchstreamsolutions.com

American Childhood Cancer Organization Free Medical Kits Available to Families


 

It is natural for any child to be fearful of new experiences and strange environments-for children with cancer, the hospital can quickly become a scary, confusing place that they associate with pain and sickness.
 

The Acco Medical Play Kit  is a free resource designed to familiarize children battling cancer with many of the medical instruments they will encounter during their hospital stays. We hope to empower children by helping them become more comfortable in a hospital environment and giving them the opportunity to play the role of doctor/caregiver rather than be forced into the role of patient.

 

Kids can test out their Medical Play Kit supplies on Cozy the Port-a-Cat, the soft, snuggly stuffed animal that serves as both a teaching tool and a companion for children before, during, and after their cancer treatment. Available for free to all children with cancer, Cozy cat has strategically-placed patches that represent port access, bone marrow aspirate, spinal tap, gastrostomy tube (g-tube), and a hand IV. With Cozy as a guide, children can use their medical play kit to see where a particular procedure will take place, and he or she can even watch Cozy have the procedure first!

 

One of the strongest types of fear is that of the unknown- by giving children the opportunity to better understand and mentally prepare for upcoming tests or treatments, the Medical Play Kit helps to move formerly scary/unknown procedures into the familiar category, thereby easing the child's anxiety and fear related to certain aspects of treatment.
 

Click Here to request this free Medical Play Kit for your brave cancer fighter.

Shop and Give with Amazon Smile

 

Did you know that Amazon Smile works JUST like Amazon except you can be supporting your favorite charity while shopping?! If you select CURE (see link below), a percentage of your purchase will be donated to us! Shopping AND helping local families? Can it get any better?! Just click here to be taken to the Amazon Smile site. Once you're there, make sure you add it to your bookmarks so you remember to give to CURE every time you shop Amazon.
SmallPrint Teams with CURE to Offer Unique Jewelry

Alicia Thompson, Owner

Smallprint Rochester captures your child's fingerprint, hand print, foot print or artwork in silver pendants for necklaces or bracelets, cuff links or key rings. 
Smallprint has offered that 15% of all jewelry pieces purchased would go to CURE Childhood Cancer Association.  You can see more of their line at
www.smallprint.com or you can contact the owner, Alicia Thompson, for more information and how to order.  Her contact information is 585-402-9028 or email her at [email protected]
Boost Tutoring
For Kids and Teens

 

Boost tutors are available during and/or after treatment for as long as needed, even after returning to school.  These services are provided free of charge by highly qualified teachers who are dedicated to making a difference in the lives of children.  If your child is struggling with schoolwork, even if treatment was completed long ago, please contact Linda Bolan at 585-317-7269 or [email protected] to learn more about how boost tutoring may be able to help.  Tutors are available during the summer as well as during the school year.

 

Boost Needs Volunteer Retired Teachers

 

If you have K-12+ experience and are interested in making a difference in the life of a child with a chronic illness, who is struggling with school work and needs supplemental tutoring, please contact Linda Bolan at 585-317-7269 or by email at [email protected] for more information about Boost.

Kako Cares Charity Program for CURE

Make a small donation to CURE and KAKO Beauty will send you our "Product of the Month" 
FREE. 100% of the donations received go directly to this charity. This is Kako Beauty's way of giving back to the communities which have made us successful.
 

For as little as a $1 donation you will receive a Free Luxury personal care product from KAKO Beauty.  100% of the donations received go directly to CURE. Free items are different each month so you can donate often!  Please click on the link below to be taken to the site.

 

Volunteer Opportunities
And Other Ways to Help

Margaret Hummel Society

 

Please remember CURE in your will or estate planning and join the Margaret Hummel Society. For more information please contact CURE's director of operations, Mary Gallis at [email protected]

 

Would you like to volunteer with CURE?  

 

We have several volunteer opportunities coming up and have events throughout the year where we need help.  If you would like to be on our volunteer list, please take some time to fill out this form and email it to Kiersten Kunick, our Director of Programs at [email protected].

Recycle Ink, Toner, Small Electronics & Help CURE
recycle 
Wondering what to do with your old ink and toner cartridges?  How about that cell phone that no longer works?  Bring them to CURE and help us while helping the environment by keeping them out of landfills!  We have contracted with a professional recycling company that will pick up items at our office and pay us a small reward for each item we collect.  Please call the CURE office at 585-473-0180 to schedule a time to drop off your items. 
Interested in Donating?

If you would like to make a donation to CURE, please visit http://curekidscancer.com/support-us/Network For Good allows you to designate your gift to an individual fund or purpose. It also allows you to create a tribute or to honor an individual as well as send an e card to that person letting them know that you made your gift as a tribute to, or in honor of them. You also have the option of making a single or recurring donation.

We also have a new website to donate to CURE: https://curecca.ejoinme.org/curekidscancer

If you have further questions about donating to CURE, please contact Director of Operations, Mary Gallis at [email protected] or by calling the office at 585-473-0180.

"Every minute of every hour of every day you are making the world, just as you are making yourself, and you might as well do it with generosity, kindness, and style" -Rebecca Solnit

Continuing Events
CURE Bears of Hope and Love

Help the families of CURE and help the environment! When you deposit your old bottles, the proceeds will go towards purchasing bears and outfits for children undergoing cancer treatments.

Drop off any can or bottle with a New York State deposit at the Redemption Center in Rochester (Suburban Plaza)
Henrietta Redemption Center
2199 E Henrietta Road, Rochester, NY

Make sure to inform the employees that you are dropping off bottles for the CURE Bears of Hope & Love (Account 25). Put a smile on the face of a child with cancer and get rid of those old empties! 
Community Events
CURE Bears of Hope and Love


Ongoing Programs
Provided free of cost to our families
  • Boost Tutoring (See article above for more information or go to our website at www.curekidscancer.com) or contact Linda Bolan at[email protected]
  • Coffee Group meeting for on-treatment families; Thursdays from 1-2 pm in the Kaiser Room, 4th floor Golisano Children's Hospital near the red elevators.
  • Voyage Beads- Patients can use colorful beads to build a tangible representation of their journey through cancer treatment.
  • Vouchers for free parking are provided to families of CURE children who are hospitalized or visiting the outpatient clinic.
  • CURE Bears for Hope and Love. Build-A-Bears are sent to children who are undergoing treatment for pediatric cancer.
  • Emergency financial assistance for on-treatment families.
  • Comfort bag for newly diagnosed families.
  • Emotional support and guidance from CURE's Parent Advocate.
  • Educational Programs about school issues for patients and long-term survivors.
  • Bereavement Support for families experiencing loss.
  • Social Gatherings including Cancer Survivor's Day picnic, Holiday Party and Morton Fall Family Fun Day.
CURE Childhood Cancer Association
200 Westfall Road, Rochester, NY 14620
phone: 585-473-0180
fax: 585-473-0201

 

Holly Dutcher, Associate Director, [email protected]. 585-473-0180

Mary Gallis, Director of Operations, [email protected], 585-473-0180

Linda Morrison, Parent Advocate, [email protected], 585-275-1287

Kiersten Kunick, Director of Programs, [email protected]585-473-0180 


All photos contained in this publication are the property of CURE Childhood Cancer Association or reprinted with permission, and are copyright protected.  All use of said photos is prohibited without the express written permission of CURE Childhood Cancer Association.