Gigi, Gaylene, and Brian

Gigi, Gaylene, and Brian

“Touched by 2015 Run for Ryan” by Gaylene Grossman

I feel very fortunate to have attended the 2015 Run for Ryan in Lancaster, South Carolina along with my son Brian, who is a person with KLS.  It was an experience I will never forget and one that touched me deeply.

Like many of you, my son and I followed the annual event on Facebook and the KLS Foundation website; appreciating from afar the efforts to raise awareness and funds each year to honor the memory of Ryan McKinney who tragically passed away in 2006.  His mother Donna White, Sister Gigi Scott, and a board of volunteers work all year long to organize the track and field event, awarding scholarships in Ryan’s memory.  Those attending purchased commemorative T-shirts and enjoyed authentic southern barbecue while watching rising track and field stars.  There was something for everyone to enjoy, including jolly jumps and arts and crafts for the little ones. A DJ provided dancing music and there were raffles for great prizes including two brand new bicycles! All proceeds went towards the scholarships for three lucky high school seniors, and towards funding research dedicated to identifying the cause and possible treatments for KLS.

Megan Burns and Brian Sabul, addressing the attendees, shared their experiences as people with KLS and had the opportunity to thank everyone there for their work to raise awareness and funds.  The following are their speeches:  

We all got to meet Megan’s adorable new baby, Abigail who serves as a testament to the normalcy of life that many with KLS can and do achieve.

I was asked to speak about my experience as a mother of someone living with KLS. It was most important for me to highlight the significance of awareness and early diagnosis.  My son was diagnosed a few weeks after his first episode because I was able to find information from Donna and others who wrote about KLS and worked to develop the KLS Foundation.  This is really quite amazing considering that most suffer without knowing what they have for about 4 years. Understanding KLS and what was happening to Brian combined with the support I received from the KLS community allowed our family to immediately provide the best supportive care for him and to cope with the years ahead.

During my speech, the image of Donna as a modern-day heroin struck me; a woman who could have been defeated by her grief but instead managed to turn a tragic event into a beautiful tribute to her son. It is through the Run for Ryan that she assures his spirit will live on while lifting the spirits of others. In April 2006, the same month that Brian had his first episode, Donna wrote an article in the Lancaster News saying, “If I yell long enough and loud enough, then hopefully not another family will have to go through what we went through.”   I heard you, Donna, when I needed the information and words of assurance the most. Countless other lives have been immeasurably improved because of your voice and your courage.  I am forever touched by the work of Donna White and the people of Lancaster to raise awareness about KLS. Through their efforts, the memory of Ryan McKinney is honored along with the entire KLS community.

God Bless you, Donna.

With Love,

Gaylene Grossman

Advisory Board Member, KLS Foundation

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