Our Story

NF First (Neurofibromatosis First) is the realization of a dream Myshell Reith had. Its creation is a promise we made to our daughter before Neurofibromatosis (NF) took her life in September 2016. When Myshell could no longer fight, we promised her we would.

Myshell and her family felt so alone when they were told she had NF. There weren’t many people to talk to about it and sadly, many medical professionals had no idea what NF was, making the family feel even further isolated; a common occurrence with families affected by NF.

Active in promoting awareness of NF in her local community using any means possible Myshell wanted everyone to know what NF was and as a family we were there to help her do so!

Our daughter told us one day how it bothered her that we helped raise so much money but had not seen it serve our area. She asked us if we could start our own organization that would put the disorder first. One where no one earned a paycheck but that would really make a difference to patients and their families. We were all for helping her achieve this dream however her health declined and we focused on her as any parent would.

At NF First we WILL listen to you, respect you and make sure that the funds raised go to help the area in which we live and/or treat regardless of age, race, gender, social, or financial status. We WILL fight for awareness, we WILL fight for the education of our area medical professionals, and we WILL support anyone affected by NF to the very best of our ability. That was Myshell’s wish and that is what NF First is now going to do with a volunteer Board of Directors and staff.

NF First was born with the purpose to put NF and its people first, to educate the public of the disorder, while working with the health care profession to advance scientific research to ensure development of the treatments, that will provide a better quality of life for all affected.

At NF First are all part of one big NF family and we WILL fight NF together. No one should have to fight alone.

Our Team


Cynthia

Cynthia

Hello, my name is Cynthia. I chose to be part of NF First because my little sister Myshell had NF. My sister had a dream – to help people like herself who live with the daily battles of NF.  Sadly, she lost her battle against NF September 9, 2016. Helping to make Myshell’s dream come true not only keeps my sister alive in my heart, but also helps all those she wanted to help. As Treasurer of NF First I will be to be a part of seeing her dream becoming a reality.


Corky

Corky

As the grandparent of a young boy with NF1, I became interested in supporting and creating support for those suffering from NF. NF is different for each individual with symptoms running the gamut of medical, emotional, and physical issues.

My desire to be a part of the NF community has led me to many wonderful new friends – online and in person. Two things stand out in every one I meet and that is their COMMITMENT to make life better for the NF community in any way that they can and the other is COURAGE. I am not sure I have ever met more courageous people who ALWAYS have a smile on their face.

NF First (Neurofibromatosis First) was created to honor the wishes of a very special young lady whom I did not have the pleasure of personally meeting. I am honored to be able to volunteer whatever services I can to this group that is dedicated to putting patients first and educating those professionals that provide care.


Crystal

Crystal

My name is Crystal Reith. I am the mother of Myshell Reith, a beautiful child who was full of life and loved every second of it. She made her goal to live every day to the fullest even though the pain caused by NF, was sometimes, unbearable. Myshell had neurofibromatosis (NF) yet it never quite had her.

Myshell was the inspiration behind the formation of a yearly walk to help fund an organization that supported NF. After doing this annual event for a few years, Myshell realized that the funds being raised by many afflicted and their families, as well as local organizations, was not coming back to the community but paying salaries. She told us she had a dream. That dream was to start a local organization that would continue the annual walk and use the funds raised to raise local awareness of NF, help families afflicted, and educate local medical professionals. As her family, we committed to helping her make that dream a reality.

NF took Myshell on September 09, 2016 but it did not take her dream. Once existing obligations to the other organization were complete, it was time to see Myshell’s dream grow its wings and fly.

As President of Neurofibromatosis First (NF First), I hope to, and am committed to, making sure every person we encounter knows we will put them and NF first.

Myshell’s dream is now a reality. Our reality. Your reality. We WILL fight NF TOGETHER as one.


Dave

Dave

I am Dave Reischel and I have NF (Neurofibromatosis).

NF First, the dream of Myshell Reith, is an organization that is dedicated to promoting awareness to NF, offering support to patients and their families, and education to members of the medical field.

As a person living with NF I know how badly awareness is needed to bring comfort and relief to people afflicted by NF and as board member, I look forward to helping NF First realize these goals through fundraising and community awareness.


Jr

Jr

Hello, I am Kurt Reith Jr. I decided to be a volunteer for NF First to honor my sister Myshell.

My sister and I were 1 year and 13 days apart and were often mistaken for twins. Myshell had Neurofibromatosis (NF for short). I was only 12 years old when we were told she had brain tumors. Watching my sister become so ill was very scary and difficult for the whole family.

What was inspiring, however, was watching my sister fight with more determination than I ever knew someone could have. When you watch someone you love fight so hard to bring awareness to the disorder, fight so hard to just live each day like it was not going to take her down, well you can’t help but to get involved.

I spent over four years helping my sister fight NF and now I am going to take that determination that she showed me, and I am going to fight for her. Though Myshell and I liked to bicker, we ALWAYS had each other’s backs. I still have hers.

I am finishing up my senior year of High School so who knows what my future will hold. What I do know is I am going to be a part of seeing her dream of awareness, education, and a cure become a reality right alongside my sister Cindy, my parents, the entire NF First board, and all the NF families we have met along Myshell’s Journey.


Kim

Kim

Hi My name is Kim Mazur and I was born with NF1. I was the first one in my family to have it. When Mike and I married we were blessed with three daughters. If you have NF you have a 50/50 chance of passing it on to your child. What are the odds that all three of our daughters would be born with it? (seems greater than 50/50 to us). I am joining NF First to help keep MyShells dream alive. I believe in her vision of supporting local families, local doctors and research to fund a treatment and find a cure. I also support this organization because 100% of everything raised goes toward those goals.

One of my daughters spent most of her life fighting the tumors that ultimately took her life so I am passionate that a cure be found.

Kim Mazur-- author and creator Losing My Reflection.........a grief journal coloring book


Kurt

Kurt

My name is Kurt Reith and I am the Vice President of Neurofibromatosis First (NF First). My family started this to fulfill a dream our dear sweet Myshell had.  Myshell's dream was to have an organization that put the people and the disorder first’ not their paycheck.  We are very proud of our daughter for realizing that this was how a true charity should work.  As a parent, I did not need any convincing to get behind Myshell’s dream although her health caused the project to be put on hold for a time.

On September 09, 2016, our lives changed forever when NF took her from us.  Although NF took Myshell, our family will not let it take her dream and together we decided to keep the fight going.  We have met so many people affected by NF. Many that have become family and together we will keep up the fight for them and for our sweet angel’s dream.


Mary Ann

Mary Ann

My experience as an active board member of Eau Claire’s Public Access Community Television (CTV) from 1993 to 2017 also a current member and volunteer helped me make the decision to be Secretary of the Board of Directors for Neurofibromatosis First (NF First). Having personally known Myshell Reith for a number of years and watching her struggles with NF, my heart urges me to be a part of Myshell’s dream to bring education and awareness to both the medical field and the community. I look forward to honoring Myshell’s memory in this way, and any other way I can.


Sandy

Sandy

I am Sandy Reischel. I am married to Dave Reischel who has Neurofibromatosis.

I am delighted to be able to serve the NF community by being a part of the board of NF First!

I hope to be an active part of helping this organization become a support vehicle for area families. By raising awareness and funds we will be able provide educational materials to the local medical community and make sure area families have the necessary links to support and information that they need.


Shellby

Shellby

My name is Shellby Shark Reith and I am a big part of NF First!

I was named after the group’s inspiration, Myshell. That is where the “Shell” part of my name comes from and “by” (pronounced be) as she will be forever in our hearts. Shark, well that is because of a passion Myshell had for sharks, and Reith because I am a big part of the family!

Myshell was all set to get a sensory dog and a blue merle Australian Sheppard is what she had decided on. The puppy that was picked became available the day after Myshell was hospitalized so the family had to pass on it. At the hospital, when the family realized that Myshell would not be coming home, they decided they were still going to get the puppy. It had to be a Blue Merle Australian Sheppard!

My mom looked at hundreds and hundreds of puppies but fell in love with my picture right away! The only problem was I was already sold. Then on a day when my mommy was super sad she kissed the memorial necklace that she wore in honor of Myshell and asked for help! It was at that exact moment that my mommy found out I became available again. The people that bought me, changed their mind and bought my sibling. A sign from Heaven, I say!

Home I came, and my job was to make mommy feel better. I noticed almost immediately that something was not right with her. She had these moments when she would get sick. I could tell her those were coming and after a lot of training, I got my official job as her Service Dog. If you ever see my mommy, chances are you will see me too. I am very proud to be by my mom’s side and to help her in any way possible. I am also very proud to be part of NF First honoring my name sake. And let’s face it, I am cute and draw lots of attention. Exactly what NF needs!