Educational Help is Here!

I remember when I first started working as the Educational Liaison for the Pediatric Hematology/Oncology Division at Strong. After a long career as a special education teacher and school administrator, I thought it would be fairly easy to advocate for children with cancer, brain tumors and sickle cell disease. Of course the schools would want to support their students going through a difficult diagnosis and treatment. I would just have to guide them as to what to expect and what they would need. I found that for a variety of reasons, mostly having to do with lack of knowledge by schools as to their role, that many children had a difficult time accessing needed supports. I remember seeing many very motivated, hard working students struggling in school because of an underlying learning problem caused by their treatment but not identified by the school districts and helping them to reach their fullest potential with needed supports. More than 20 years later, I understand that for families, school may be the last thing they think of when their child is faced with a cancer or blood disorder diagnosis. But as the child goes through treatment or even after treatment has ended, there may be many school issues associated with their diagnosis that are hard to manage and some families may need an advocate to help them support their child. You may be one of those families. For instance, is your child falling behind because of absences due to their illness? Is the school making appropriate accommodations for their physical needs? Are they taking a long time to finish homework? Have their grades dropped? Have you been told that they are at risk for developing learning problems from their treatment? If so, I may be able to help! If you are worried about your child’s schooling as a result of their disease, contact Kiersten Kunick, CURE’s Parent Advocate at 585-697-4470 or kiersten.kunick@curekidscancer.com and she can make a referral to me for a free consultation. I would be happy to discuss your concerns and develop a plan to meet your needs. CURE offers my services to you at no charge. It may just take a phone call or perhaps it would be a meeting with school. We can work together to help you with school issues affecting your child.


School Blog by Kathryn Wissler, Educational Consultant for CURE

The United Way Campaign

As you may know, the spring campaign for the United Way is rapidly approaching. We wanted to give you some info about CURE that can help with that burning question: “Why designate to CURE?”

Last year alone, our Parent Advocates:

  • made nearly 2,000 visits to families in the hospital – both in clinic and inpatient
  • distributed over 6,500 individual parking passes
  • assisted families who would be in the hospital for a longer period of time with 35 monthly parking passes
  • fed our families in the hospital with over 400 meal vouchers

For the first time ever, CURE provided holiday meals to families in the hospital on Thanksgiving and Christmas Day.

Over 300 family members attended our annual Survivor’s Day Picnic in June!

We coordinated holiday wish lists for 38 families, sponsored 17 of our own families and provided food baskets WITH $50 grocery store gift cards to over 20 families.

CURE helped families through some of the darkest days of their lives, providing nearly $5,000 in funeral assistance.

We are introducing new programs – like Parents’ Night Out for our CURE Parents to connect and have fun, and partnerships with other organizations…

…and we want to do MORE!! With your help, we can.

When your United Way representative comes to your workplace, please think about CURE. Please think about our children and their families. Make a difference.

Want to make a BIGGER impact? We’ve created a FUN flyer you can post at your desk, letting your coworkers know you designated to CURE. The challenge is out there – will you post this at your desk?!

UW Donation

Click this link ^ (We promise it’s a pdf)

Holiday Heroes

Be sure to check out this year’s Holiday Heroes ads that appeared in The Messenger Post today!

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Thank you to our friends and supporters who thought of CURE and our families this holiday season.

Thankfulness is a work of heart…

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Submitted by Erin

For many of us, our mood is influenced by our surroundings. Stores do a wonderful job getting shoppers ‘in the mood’ for whatever season they want to promote. For me, it feels like we went right from costumes and candy corn to holiday and Christmas decorations without any mention of Thanksgiving.

Thanksgiving is a time when people tend to reflect on the experiences that have given them quality moments in their life. As a CURE family, we are thankful for everyone that is in our life because of our experience with cancer through our daughter.  When your child is diagnosed with cancer, your ‘family’ becomes larger than you even imagined; you have strangers willing to give selflessly to you in an effort to help in any way they can; and you have an entire community of new people that you come to know and would probably never meet if the circumstances were different.

So, how would you begin to repay everyone that came to your assistance and stood by your side during the hospital stays and treatments and whatever was to follow? I think the best we can do is to continue to give thanks for those people and when others are in need as we once were, try to pay it forward.

CURE Childhood Cancer Association has been giving thanks all year for the multitude of friends who have been a support to CURE over the last 40 years. Let’s be encouraged to embrace a season of thankfulness and think about the people that have made a difference in our lives.

Wishing you all a very Happy Thanksgiving!

 

Catching up with Kiersten…

austin

This picture truly brings joy to my heart! I think back to when Austin was going through his cancer treatments for leukemia and he asked to play football. I wouldn’t let him until he was done with treatment. When he would get his intrathecal methotrexate (chemo into his spine) the doctor would say “Don’t allow him to do anything that requires balance.” It also sapped his energy. He would tire easily but he worked hard to keep up with his brother and his friends. He would want to play with the neighborhood boys who played backyard football and they would tell him he was no good. To be fair, backyard football is all about catching and throwing and running and he wasn’t awesome at those things. But man could he stop you. So he wanted desperately to play real football.  But I didn’t want to have to worry about where the bruises were coming from. Since leukemia is a blood cancer, bruises are an indicator and that was what lead us to his diagnosis.

Once he completed treatments though, I stood in line early in the morning to get him signed up. And we waited. Would there be enough space on the team? Thankfully yes and Austin’s football career began. A year later than his classmates, but he quickly caught up. He was given growth stunting hormones during his treatment to stop the growth of the cancer and during his treatment his growth chart was flat. But after treatment he would have terrible pains in his legs. I took him to the doctor fearing the worst and was told they were growing pains. His body was bound and determined to catch back up to where it was supposed to be all along. Today, he stands at 6’5″ and he suited up for his college football team, the Division 1 UB Bulls. While he was not recruited to play at the D1 level (there were many D3, D2 and NAIA teams who wanted him) he chose an academic scholarship from the engineering department at UB and approached the coach about walking on. They took a chance and through hard work, determination and a lot of eating, he was invited back this year. I am so incredibly proud of the man he has become, of the hard work he puts in studying aerospace and mechanical engineering and of the kind words his teammates and coaches say about him. As a cancer survivor he continues to provide hope and inspiration. At least he does with me!

40 years strong

When I told people we were going to be hosting a luncheon for the Founders and early CURE families the day before the Recipe for a CURE Sunday Brunch, they all thought I was crazy. Why would I ever plan such an important event the day before our biggest fundraising event of the year, especially with such a small staff working on both projects? I can now reflect on the decision to host the Founders’ Luncheon since we are a couple weeks out (and I’ve caught my breath!). Being in the presence of the families who gave so much of themselves to ensure future families would be helped was awe-inspiring. And I’m not just saying that. I cannot imagine going through such an incredibly difficult time in my life and turning it into something that has helped thousands of families over the past 40 years. I can’t fathom. But they did it.

The original Founders are:

Mr and Mrs. Ed Sewell

Mr. and Mrs. Wendell Sittser

Mr. and Mrs. Mac Stutzman

Mr. and Mrs. Carl Wheat

Mr. and Mrs. Charles Koch

Mr. and Mrs. James Harper

Mr. and Mrs. John Sturge

Mrs. Diana Spengler

Mrs. Ann Dombroski

Mrs. Maureen Derleth

Mrs. Betty Rockford

Ms. Jo-Ann Belle Isle

and Ms. Barbara Conradt

YOU have all made a tremendous difference in the lives of parents hearing those dreaded words “Your child has cancer” or “Your child has a chronic blood disorder”. We at CURE would like to honor the memory of your little fighters who were taken too soon. We wouldn’t exist without their fight. We wouldn’t exist without YOUR fight. You built the foundation of an organization with the mission of advocating for parents and their children. I truly feel we have honored your mission and continued it, if not expanded upon it. We are here for these families and will do whatever we can to ease the burden they find themselves under – using the foundation you built as our guide. It was life changing meeting these Founders and early families…these parents who gave so much of themselves to help every family being treated at Golisano Children’s Hospital for pediatric cancer or chronic blood diseases.

CURE is a unique organization. I am constantly in awe of the people I have the privilege of meeting. It is amazing to me that families who are experiencing some of the most difficult and trying times of their lives want to help others undergoing similar circumstances. But that is the norm. CURE parents want to reach out to other parents and help however they can. CURE parents want to sponsor other CURE families during the holidays. CURE parents want to participate in events and fundraisers we hold, even creating some of their own. CURE parents are heroes. CURE parents are strong. CURE parents show compassion for one another and lend an ear or share a hug when they can. YOU are all incredible. Thank you for being an inspiration to those around you.

We are committed to helping families during the most difficult days of their lives and will continue to fulfill the legacy left by these original little fighters until no parent has to hear those horrible words again because a cure has been discovered.

 

My Last Day..

Meet our Kid Chefs!

Meet our 8th Annual Recipe for a CURE Sunday Brunch Special CURE Kid Chefs!

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Roman

 kailee-kwiecein_zpskwb2wm3b

Kailee

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Cooper

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Braxton

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Craig

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Caitlyn

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Prynce’Ayr

Fidel

Luc
See them in action on Sunday, October 9th at the Radisson Hotel Rochester Riverside.

Tickets are on sale now.

Purchase them here!

Meet Erin!

An Inside Perspective At CURE:

Hello! My name is Erin Sackett and I joined the CURE staff in May as the new bookkeeper.  My family has been a CURE family since 2012 , so when approached about the position, I was honored that they would think of me.

I was blessed to work alongside of Mary Gallis during her last couple of months at CURE before she retired.   While trying to learn about what happens in the bookkeeping office at CURE, I was amazed to learn how much goes on that I was never aware of.

The tireless planning that goes in to everything CURE does has made me admire this organization even more.     This summer brought me the opportunity to attend events and serve CURE families from a different side and with a greater perspective.

  • At the Survivor’s Day picnic – I helped our survivors get ‘glamoured -up’ and I saw proof that a little mud never hurt anyone.
  • At Cutting 4 A CURE – we met beautiful people willing to follow Holly’s lead and donate their hair to Children With Hair Loss.
  • At the Park Avenue Festival – I met people anxious to help support CURE, spread awareness about childhood cancer and even tell their own “survivor stories.”
  • At the Harmony Hill Farm Day- there were pony rides, baby lambs and we saw princesses chasing goats!
  • At the Painting With A Twist Parent Night – I was fortunate to meet other CURE parents that have fought alongside of their kids and needed to put that burden down for a night.

Some common threads are that our CURE kids and CURE parents want to feel special, they want to have fun, they want to give of themselves to help others, they want to share their stories, they want to make ends meet and their lives may have a “new” normal.

This is not an epiphany to the staff at CURE – they make it their passion to know what their families need.    While my position at CURE has very little to do with any of the events they coordinate or programs they offer to families, it does allow me the chance to see the impact.

I look forward to meeting more CURE families, while keeping up with the bookkeeping tasks at the CURE office.

 

Checking in with Tonia…

This is my first blog in my current position as Parent Advocate for CURE.  Out of all my positions to date this has been the most meaningful.  Reason being I have been personally touched by this terrible disease cancer as well as a rare blood disorder, which currently has no cure through two of my own children.  I find it a true privilege and honor to be able to assist families on their journey.  A journey that no one I have ever met either asked for or expected.

I’ve realized that life is like that, full of the unexpected.  Something occurring that we didn’t plan for or foresee can often times cause anxiety.  Although, when we embrace the “intrusion” it can the making of something amazingly incredible.  Just think we often discover our strengths through adversity.  If it were not for my unforeseen adversity I probably would not have and the opportunity to meet all of you!