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

craig-winter_zpswjvrxlar

Craig

grillo_zps17d6tss8

Caitlyn

dominic-kid-chef_zpsu45vxcsaDominic

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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!

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.

My first Survivors Day Picnic

My first Survivors Day Picnic

Sunday, June 5th was the first time I held CURE’s annual Survivors Day Picnic. You might be thinking “it couldn’t be that hard”, well planning an event is a lot more stressful than you may think. When I started my internship in August of 2015, I watched Kiersten plan events and put them into action, and at that time, I thought to myself, I want to do that someday. Then all of a sudden, a couple months later, the position opened up and I was ecstatic. This was my dream job and I could not wait to dig in. Two months went by and everything was going good. Companies/individuals who sponsored the picnic last year, wanted to get involved again this year and everything was great. I even had TOO many people signed up to volunteer! As June 5th came closer, I started to get stressed a lot more and people kept telling me, “don’t worry about it, it is going to be an amazing day, you’ll see” and all I could think to myself was, “I don’t get it, how am I supposed to have fun when all these people are counting on me.”

There are a lot of details needed for planning an event…Food, decorations, t-shirts, venue, music, sponsorship, entertainment, budget, prizes, games, crafts, volunteers, schedules, ect. It takes a lot of organization or preparedness… and no one will understand until they actually plan an event.

The week leading up to the event came really fast…and all of a sudden, everything needed to be done with in a couple days. I am thankful for Jessica, who is interning this summer, for helping me pack everything needed. Friday, June 3rd came around and that was the last day to get everything ready, and I really did seem ready and over prepared. I packed everything I could think of, just in case we ran out of something random, like napkins….

Then it was Saturday, June 4th, and I was picking up the U-Haul to get everything packed for the NEXT DAY!! Time really does fly by. I remember when it was February and I started planning the picnic and was extremely nervous for the day to actually come. Have you ever been so nervous for something that you just want to skip all the time leading up to the day and skip to the day after when it is over? That’s how I felt for the whole month of April and May. Then as June hit, I had everything really set and ready to go, and then I got excited.

Sunday, June 5th, the day of the picnic. The only thing I was hoping for, was that everything went smoothly and there were no big problems. Of course there are going to be problems, but I didn’t want that to happen to me my first year. I wanted this to be a good year so I could really say “I loved planning my first event”. Well, of course, it rained the majority of the day. Yes, it could have been worse like snow or lightening, but I really just wanted this day to go perfect so all the families could come and enjoy and be outside.

9:30 am came around and I was at the park ready to go. I was thinking about the million things that could gone wrong that day, such as the table and chairs being late, or bringing the wrong order or Wegmans delivering the incorrect amount of food. Well at 10am all the staff showed up on time to help me out (obviously I could not have done this without the help and support from them), and the table and chairs were delivered ON TIME! At 11am the volunteers showed up to help set up (around 30 never showed up). Thankfully I had TOO many volunteers! The picnic had never been really rained on before, so I had to decide if we should just not have any games, and not set up a bunch of crafts, or move it into the shelter 50 feet away. I asked opinions of a couple of different people, and of course, I received mixed feeling on this. I had people on my right side saying don’t bother because families won’t go over there and volunteers will be bored, and people on my left side saying kids will go over there because they won’t want to be stuck in the shelter the whole time. So I made the decision to move all the crafts and games into the other shelter, and I am glad I did. Families did need to get out and walk around a little bit. It was successful! The day went by extremely fast. From 1pm to 4pm I felt over joyed, proud, amazing, fearless and on top of the world. Not because I planned this event, but because it went smoothly, nothing went wrong and all the families ABSOLUTELY enjoyed every second of it. This was one of the best days of my life. The look on the kids’ faces and the satisfaction on the parent’s faces, made every second of worry and stress go away. Doing something for people who REALLY need it, is the best feeling in the world. It’s hard to explain, but it’s a feeling like no other. When you don’t do it for yourself, but you do it for the people who need a day to celebrate and be worry free. You do it for the kids who need a day to play, dance, be creative, climb in a fire truck and eat candy! I am already excited to start planning the picnic for next year.

Lastly, I am proud of myself. Planning an event that means so much to these kids, feels really, really great. I was able to give them a day of fun. This was a big stepping stone for me and most definitely gave me a boost of confidence for the future. I will do great things here.

 

  • Chelsea LePore

Money isn’t everything…

As a nonprofit, we feel as though we constantly have our hands out, looking for monetary donations to keep our organization running and our programs intact. But I am here to tell you that money isn’t everything. There are other, just as meaningful ways you can make a difference to CURE.

This past week, Team Depot came out in full force! Under the leadership of their co-worker (and CURE parent) Brad DiLeo, the team spent the entire day updating, upgrading and beautifying the Julie Roberts Children’s Memorial Garden here at the CURE office. Planning began earlier this year when Brad contacted me to let me know that his team was looking to make a difference to CURE through donating their time and coordinating donations from The Home Depot and their suppliers for our garden. Brad stopped by the office a couple of weeks ago to access the work that could be done by he and his four co-workers. Naturally, I picked the difficult task of removing the low bushes that lined our Memorial Brick Walkway, with the hope that new and more updated plants would be added. Brad kindly smiled, knowing the daunting task I had charged him with and continued his planning. The day before the big day, Brad came out to the office and removed the bushes himself! He wanted to ensure his team would have enough time to complete the tasks at hand, so he took it upon himself to take those bushes head on and remove them. On May 11th, Brad and his co-workers (Anne Pagliaro {District Manager}, Matt Teresi {District HR Manager}, Kim Goole {District Asset Protection} and Jeff Burke {Pro-Sales}) spent their day making our garden beautiful again. They planted new plants where the bushes were torn out and throughout the garden (including gold and purple petunias along our flagstone wall because of the childhood cancer awareness ribbon being gold and general cancer awareness ribbon being purple), repaired and stained our arbor, spread mulch throughout the entire garden, added new and improved solar lighting throughout to highlight trees, signs and our bricks and added planters to help beautify our front door and bench on the arbor at the end of our Memorial Walkway. See the picture below for our incredible friends from Team Depot:

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Brad has been exceptionally kind to CURE for many years – coordinating donations to CURE for various events (especially the Recipe for a CURE Brunch) and participating in our Survivor’s Day Picnic with his team by offering a building activity for our guests. We appreciate Brad continuing to keep our CURE families in mind and we hope he understands how meaningful it is to us here at CURE.

Brad, thank you for the difference you made at CURE. Thank you for exposing your co-workers to our organization. Thank you for exposing your employer to our organization. We sincerely appreciate it.

If you are a CURE family and want to make a difference, money isn’t everything. Do you have talents you can offer to us on one of our event planning committees? Maybe your kids would like to host a lemonade stand this summer. Gather your co-workers and put together a themed basket for our Recipe for a CURE Sunday brunch auction. Contact the office or sign up to volunteer at one of the many events we are hosting this summer. You can make a difference!

Now let’s see those before and after pictures!

Before:

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And….(taaaaa daaaaaa) After:

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Why CURE?

WHY CURE?

As you may know, we are celebrating our 40th anniversary here at CURE. We have been in the community making a difference to families being treated at Strong (Golisano Children’s Hospital) for 40 years! We are funded primarily through internal fundraisers, one of which is RAPIDLY approaching on April 30th. We’ve set an aggressive goal of $20,000 and we know we can do it with your help. As of today, here is where we are at with our goal:CURE-fk_thermometer2-01

You can register today and help us to achieve our goal.

Participate.

Create a fundraising team.

Donate.

Share this message with your network.

Make a difference – click here

YOU have all helped us to assist families throughout the past.

Are you thinking to yourself: “There are SO MANY organizations that help families in Rochester. Why should I choose CURE?

We started asking the question: “Why CURE?”

Here are some of our findings:

It seems only fitting that I start things off, as Executive Director of CURE. For those of you who don’t know me, I have my background in Accounting. Community service and helping those around me is something that is rooted deep in my soul, planted within me by my parents, who believe in the spirit of giving and helping those around you. This idea runs through to my core. Working in the business world, I wasn’t feeling fulfilled – I knew I had more to give. I started volunteering with CURE, created my own fundraising event, joined the Board of Directors and eventually joined the Staff. But why? I truly want to help the families CURE helps. If I was in their position, I would want someone like me fighting for my family, doing whatever they could to help in whichever way they could. That’s why CURE is here. I am constantly inspired by our CURE families, who may be experiencing the most difficult days of their lives, yet they make it through…with grace and courage and strength. CURE families inspire me to face each day with grace…and strength…and courage…and kindness. I consistently am amazed by the kindness shown by our CURE families for each other.

 

Longtime Volunteer: “YOU! Seriously, CURE is so small. I know I am really needed and can really do something and I always feel like I’m appreciated and making a difference. Some other organizations take their volunteers too much for granted. What drew me to CURE is the fact that CURE is hands on with the families as opposed to organizations that fund research. I know both are important but I would rather see what we are doing is helping as opposed to the wait and see what happens in the long run.”

 

CURE dad: “CURE made a direct connection with us from the get go…The other organizations didn’t come around for awhile. And some didn’t offer much help.”

 

We will share more stories like this in the coming months, but for now, we ask you…

WHY CURE?