October Newsletter

Meet our Kid Chefs!

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

roman-statt_zpsww9k1frw

Roman

 kailee-kwiecein_zpskwb2wm3b

Kailee

cooper-lamere_zpsypxwl3ey

Cooper

d63ea59d-071a-40ac-ab64-fc56e01a994c_zps96ahyytc

Braxton

craig-winter_zpswjvrxlar

Craig

grillo_zps17d6tss8

Caitlyn

dominic-kid-chef_zpsu45vxcsaDominic

prynceayr_zpsj87ipqsk

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

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

2016 June Newsletter