Meet Our Team

Introducing Our Team

President - Beth & Kevin Lockwood: 

We work as a team and are devoted to Emma and Nicholas Lockwood, who have SMA Type I.
Beth is a former research assistant at Cincinnati Children’s Hospital and tutor of children with autism. Kevin is a high school band director. They started the Ohio-Kentucky-Indiana “OKI” FSMA Chapter shortly after Nick was diagnosed.

We realize now that a cure will take time, but we do not give up hope for a treatment or cure. Small changes and improvements would make a huge difference for Emma and Nick, and other children living with this disease.
FSMA turned our hopelessness into hope for the future through new drug trials and stem cell research. Our faith is in FSMA because of their diversified research approach. They don’t put all their research eggs in one basket! We choose to raise money for FSMA because 80% of the money we raise goes directly into SMA research. Finally, we are proud to be part of an organization that supports families nationwide who live everyday with the challenges of SMA.

E-mail Beth: mailto:bethml@fuse.net

Vice President - Kristen Smith:

I first learned of SMA the day my nephew, William, was diagnosed.  Although he lives in the Boston area, where I grew up, I was out east when my sister and her husband received the news.  It was devastating to hear the diagnosis and the statistics associated with it.  However, since then my hope has increased and continues to increase for William and all the wonderful people I have met that live with this disease.  I first attended a fund raiser in the Boston area where I learned about all the research that was happening and the private organization that was funding it.  Later at home, I was thrilled when I drove up next to a van with a "Cure SMA" license plate and discovered I was not alone in Cincinnati with my passion for this cause.  I rolled down my window and asked the driver for his phone number.  Alex's grandfather, John, (now our chapter's treasurer) was happy to make the connection.  My sister also discovered another family in my area on the FSMA website the week she was to visit me in Cincinnati.  We met up with them and later I traveled with them to the FSMA conference in Chicago.  I was soon invited to join the newly forming chapter of FSMA in the Cincinnati area.  Meeting people so passionate for finding a cure keeps me involved.  We are fighting to save lives.  It is not just about William anymore, it is about every young person with SMA and their family.  However, for every Walk-n-Roll it is William, my courageous and infectiously enthusiastic nephew, that inspires me to do all that I can to raise money and awareness.  We will find a cure!

E-mail Kristen:  smithjkbc@cinci.rr.com

Treasurer - John Hilston

E-mail John:  john@waronsma.com

Secretary - Nicole Haake

I became aware of SMA in 1998 when I lived in Colorado. My friends, Caren and Jesse, were given the diagnosis that their daughter Emily had SMA.  Emily was a beautiful little girl who fought hard but lost her fight at the age of 4 months in February 1999.

Caren joined FSMA and planned the first walk in Colorado Springs and I jumped in to help.  I was part of two more walks there before we moved to Mason, Ohio in 2002.

Within weeks of moving to our new house we spotted a van in the neighborhood with “Cure SMA” as its license plate (Alex’s grandparents) and then a few weeks later saw an advertisement for the 1^st Annual Walk and Roll for the OKI Chapter…definitely signs that we were still needed!  We attended that walk as a family team and had a great time.  For me it was not enough and I called to get Chapter meeting information and I attended from then on.

I later became secretary for the OKI Chapter and have enjoyed meeting all the wonderful SMA families. My family and I are honored to help with this fight in memory of little Emily and for all the angels and children fighting today, I am awed by you all. My wish, like everyone else’s, is that one day I will not be needed.  There will be a cure and all that needs to be organized is the celebration!

E-mail Nicole:  okifsmasec@aol.com

Newsletter Editor - Jan Merkle

I am a mother of two daughters, Beth and Angie, and grandmother to Emma and Nick. I work part time as a cosmetologist and also help care for my grandchildren.  I had never heard of Spinal Muscular Atrophy until my granddaughter was diagnosed at around 4 months of age.  After my second grandchild was born with SMA, my daughter, Beth, started the local OKI Chapter of Families of Spinal Muscular Atrophy. I became involved with the chapter by editing the Newsletter, with help from a good friend, Linda, who adds all the pictures.  By doing this I have met many families and amazing children.  I will continue to be involved with this organization as long as I am able or till a cure is found.

E-mail Jan: gaga1221@fuse.net

Website Designer - MJ Purk 

I am a student at Wright State University and am currently majoring in Rehabilitation Services. I can’t begin to truly talk about myself without mentioning that I have a physical disability called Spinal Muscular Atrophy or SMA. SMA is an inherited condition, so was passed down, genetically, to me from my parents. No one else in my family has SMA, except for my sister, Emma, who passed away in 1992.I am currently an intern for the OKI Chapter and Miracle for Madison & Friends. I have always enjoyed website design and have a great passion for helping other families dealing with SMA.

E-mail MJ: mj.purk@gmail.com