The 2018 Walk Kickoff and Farewell to a Friend

 In Bleeding Disorders Awareness Month, NYCHC Events, Uncategorized, Unite for Bleeding Disorders Walk

By: Milybet Montijo-Cepeda

On Sunday, March 4, 2018 at 9am, NYCHC hosted the 2018 NYC UNITE for Bleeding Disorder Walk Kickoff Brunch at Bare Burger in New York.  To be quite honest, I wasn’t sure if my family was going to attend this brunch.  We had planned (my husband and I) a while ago to attend a comedy show with friends in NYC the night before. Keep in mind that we live in New Jersey and went to bed a 4:30am! Lol! So with that said, overall, I had a blast the entire weekend. With a miracle at hand, my husband, son and myself arrived on time to the brunch. The weather was very cold but we made it on an early Sunday morning. It was worth it because it was our very first kickoff.   Being part of the Walk Committee and member of the Chapter for the last three years, I couldn’t miss it.

Let’s begin with the brunch kickoff experience…

The kickoff brunch, to me, was perfect.  We were welcomed with warm smiles and hugs from the staff: Krystle, Jeri, and Jeremy.  We saw new faces and familiar faces from the community, and received important information on the Walk and other upcoming events.  The venue was decorated with balloons and garlands with the walk’s new name UNITE for Bleeding Disorders. My family had the opportunity to meet with some of the new board members of the Chapter. And let’s not forget the beautiful red ties displayed at every corner of the restaurant!  For our new readers and members, the red ties represent our community. The Red Tie Challenge is a movement created by the bleeding disorders community and the National Hemophilia Foundation (NHF) to start a conversation about inherited bleeding disorders and support Bleeding Disorders Awareness Month of March.

“Because blood ties—embodied in the color red and the tie—are what bind our community together, the red tie is the new symbol for the bleeding disorders community,” said Val Bias, NHF CEO. “The color red also conveys strength, leadership, courage, determination and, above all, empathy and love—qualities and emotions that define our community.” “Bleeding Disorders Awareness Month,” expands upon the event designated by President Ronald Reagan over 30 years ago as “Hemophilia Awareness Month.” I thought to share this brief history lesson, the teacher in me. Let’s continue onto the brunch…

The families received this wonderful bookmark that defines the many bleeding disorders and notes what the donations benefits.   This is perfect to attach to our personal walk letters to families and friends who do not know much about our community.  Great idea! 🙂

At every event, I learn something new. NYCHC Executive director Jeremy Griffin opened the event with a great speech: welcomes, thank yous, and information on the walk and its history.  I discovered that this year would be their 13th year having their walk in NYC.  Thank you Melissa! 🙂 In case some of you do not know, Melissa founded the walk 13 years ago and it has become bigger and more successful each year.

Jeremy, Jeri, Melissa, and Steve (this year’s Walk Committee Chairperson—thanks Steve!) discussed how we can motivate our family and friends to sign up for the Walk, build Walk teams, raise awareness and funds for the Walk that will be taking place on Sunday June 3, 2018 at Riverside Park. Jeremy mentioned the Chapter’s team challenge with New England Hemophilia Association.  The challenge was to see which Chapter could get more teams registered before March 10th.  Families were encouraged to register their teams online and put us in the lead.  NYCHC versus HEHA Team Challenge. The losing chapter’s Executive Director will have to sing the national anthem at their walk in June.

Drum roll please.

NYC was in the lead, but the competition resulted in a tie on March 11th.  Since there is no official winner or loser, both executive directors from both chapters will be singing the national anthem.   Are you ready Jeremy and Rich?


Farewell to our great ally and friend…

Jeremy and Melissa continued on by acknowledging and thanking Development Director, Jeri Krassner, for all of her hard work for the last 8 years with the Chapter and wished her best wishes on her next journey in life.  This was her last day working with the Chapter. Jeremy ended his speech by handing out a book he purchased by Dr. Seuss, Oh, the Places You’ll Go! He asked the staff and families to sign in this awesome book and it was given to Jeri. This is a perfect sendoff for children and adults of all ages, who are entering a new phase of their lives. I got a bit emotional when I saw Jeremy show us the book.  I too have this book for my 13-year-old son, Omar. I have been asking my family, along with his teacher, friends and coaches to sign the book ever since he was in the 3rd grade.  This book will be given to him when he graduates from high school.  This is a wonderful idea as a gift especially for Jeri as she soars to other adventures in her life. “You’ll be on your way up! / You’ll be seeing great sights! / You’ll join the high fliers / who soar to high heights.” Yes indeed.

I want to add to that Jeri is a gem.  I had the pleasure of meeting  Jeri three years ago once we relocated back to New Jersey from Florida.  My family was in search of other Chapters to be part of.  We already signed up for NJ, which we’re grateful for, but wanted to join one more.  When we attended our first NYC Back to School Event, Jeri welcomed my family with open arms.  Without hesitation, she said, “ It is okay if you live in NJ, you are also family to us too, Welcome guys!”  She also encouraged us to be involved at many events: Back to School Event, member of the Educational and Walk Committees, volunteer at the Walk as the emcee and be the DJ’s and everything in between.

“I proudly say that Jeri, you have inspired and motivated me to get out there and fundraise. I learned so much from you, you have no clue—you inspired me to always get things done with spice and everything nice! Ms. Jeri, Gracias and I will see you at the Walk … as a spectator. Thank you so much for being part of the bleeding disorders community.  You were awesome to work with; walks, educational events and conference calls.  You made my volunteer experiences these past three years a great one, mama.:) I am happy that I attended this event.”

On behalf of the Cepeda family and Chapter, we greatly appreciate your time, effort, and dedication.  You are so inspirational. You have been a valuable asset not only to the Chapter but also to many of us.  Our hearts smile and we will not forget you.


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