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..

October Newsletter

Meet our Kid Chefs!

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

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Roman

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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!

September 2016 Newsletter

My experience as a Parent Advocate…

I started training for CURE’s Parent Advocate position full time in January. I knew that I would have big shoes to fill, but decided instead of filling them, an almost impossible task; I would walk beside them in my own shoes. It has been 6 months being on my own and then training my job share partner and it feels good. But if I am to be honest, I really staring my training in June of 2001. The 9th of June, to be specific. That was the day I heard the devastating news that no parent ever wants to hear. “Your child has cancer.” It was a whirlwind of activity and new lingo; counts and blasts, marrow and methotrexate.  Hearing those words on June 9th had forever changed the trajectory of my life. I wasn’t just someone who knew someone with cancer. It was in our family. It was in my son.

Austin was a trooper through it all. At the age of 4, he didn’t really understand everything that was going on and would often listen to my conversations with friends to see how he was doing. I quickly picked up on that and would make phone calls or have conversations in his presence to tell people how strong he was and how well he was doing. Later, out of Austin’s ear shot, I would call them back and tell them of my fears and cry. But he was strong and he did well and after 2 ½ years on treatment we were done. We celebrated the 5 year mark with a big party and fundraiser. It was time to give back to so many that had given to us, supported us.

During his treatment I sometimes would ask why?  Why Austin? Why our family? Why?  One day I realized why. It was about the experience, it was about our family’s journey. That was never clearer to me than when I watched my son get up and speak in front of a school full of children about his experience as a cancer patient. As I watched him speak to these children and answer their questions with tears in my eyes, I realized that this was why.

We have had many experiences like that through the years as a family. My daughter, Kelli, who was only 1 when Austin was diagnosed, cut her hair for Locks of Love and is now working on her Gold Award in Girl Scouts designing a coloring book for teens and young adults to use while they are undergoing treatment at the hospital. Austin’s twin brother Brandon has run bone marrow registry drives in high school and now continues to do so in college. And Austin is a Leukemia and Lymphoma Society Ambassador and regularly speaks to school kids about what he has gone through. This path we have taken also led me to take a position at CURE, first as a Director of Programs and now as a Parent Advocate. I love meeting new families and sharing my son’s message of hope with families just starting this journey. Someday I hope positions like mine are not needed and that cancer is eradicated.  It has been 15 years since my son’s diagnosis and even though I can remember it like it was yesterday, I know that his is a story of hope that I will continue to share with families and someday they will have their own story of hope to share.

August 2016 Newsletter

July 2016 Newsletter