September 2013 Volunteer of the Month

Kayla Wilson

There are some people who have been supporting the fight against ALS since the Greater Philadelphia Chapter was established over 30 years ago. Others have organized events for over 20 years and some who have volunteered or been an advocate for a decade or more. Then there is our September Volunteer of the Month, who couldn’t have possibly been involved that long.

That is because Kayla Wilson of Clayton, Delaware is just 12 years old. Yet, in just about one year, this young girl has made a big difference for families with ALS.

Very often, people tell us that they knew very little about ALS until they were diagnosed with the disease or a family member was affected. Kayla was the opposite. She came home from school to get on the computer to research Lou Gehrig for her 4th grade class and her mom, Missy, was flabbergasted. Kayla’s Aunt Pam had recently been diagnosed with Lou Gehrig’s Disease and the family had not yet told the children as Aunt Pam was and is very special to everybody.

Kayla was very interested in learning about Lou Gehrig for her class because he was a baseball player and she is a very dedicated travel softball player, but, she was even more concerned about learning of the disease that took his life. Missy decided that she had to let Kayla know about Aunt Pam and when she did, Kayla said, “Aunt Pam can’t have ALS, you die from that!” When Missy confirmed that her aunt did in fact have ALS, Kayla’s immediate reaction was to find out what she could do to help.

While Kayla’s instinct to help fills her family with pride, it does not surprise them. She has always been very compassionate. For her eighth birthday, Kayla made special toy requests for her birthday party. After the party, Kayla took an entire wagon full of toys to the Children’s Hospital and did not want to keep even one for herself.

So it was natural for Kayla to see how she could help her Aunt Pam and others living with ALS. Her family decided in 2012 to get involved in the Rehoboth Beach Walk to Defeat ALS®. Kayla was very excited to participate and quickly set her goal to be the Top Youth Fundraiser. She worked hard, going door-to-door in her neighborhood with her mom and brother and talking to teachers, coaches, family members and parents of her friends. Needless to say, Kayla is not very shy. In the end, she raised over $1,100 and accepted her award proudly then started to come up with ideas for the next year’s walk.

These walk efforts would be enough to make Kayla pretty special. In fact, she already shared the story with us before to raise more awareness for the Walk to Defeat ALS®. However, Kayla did not stop there.

Early in 2013, the Greater Philadelphia Chapter decided to expand advocacy efforts to the Delaware legislature. Kayla and her family joined other advocates to have meetings with State Representatives to make the case for funding ALS patient services. When she found out she was going, Kayla asked her mom to wash her Walk to Defeat ALS® shirt because she already wore it pretty often to school to raise awareness and she wanted to make a big splash at the State House.

To say Kayla made a big impression in Delaware would be an understatement. In her first meeting, she read aloud her essay about how ALS had impacted her Aunt Pam and her whole family. Her presentation made such an impact on the State Representative that she was brought to her Representative, Jeff Spiegelman, who brought Kayla onto the floor of the State House, where, on less than an hour’s notice, she spoke to the whole State House about supporting ALS patient care. After she spoke, the whole chamber rose to give a standing ovation.

Kayla once again made her presence known in advocacy when she met with Delaware Governor Jack Markell along with her Aunt Pam and others. The Governor was so taken with Kayla’s presentation that he offered her a seat in his chair and told her she might have his job one day.

That experience just added on to all of the rest to motivate Kayla. She began fundraising in earnest during the summer for this year’s Rehoboth Beach Walk to Defeat ALS®, going door to door again with her younger brother, asking her friends, neighbors and family; and holding a fundraiser at her local Health & Nutrition store where she and her mom go for healthy shakes. These were all her ideas and the store let her put up a display with ALS logos, sayings, photos from the Walk to Defeat ALS®, and the Lou Gehrig book from 4th grade that started it all. That event alone raised over $800! At the end of August, Kayla had already raised over $2,600 and she has changed her goal to $3,000. Nobody can doubt that she can do it.

Missy is proud of the good influence Kayla has been on her 8 year old brother Connor. In one evening of going door to door with his sister, Connor collected over $230 in his Mom-Mom’s neighborhood and has now raised over $300.

 It is clear that Kayla is a positive influence not just on her brother, but on everybody she sees. Kayla turns 12 years old on September 5th and while the best gift would be a cure for ALS, we are glad we can recognize her as our Volunteer of the Month. There is no question that she will be a good influence on everybody in the fight against ALS.

"I am so proud of Kayla's compassion and efforts since I was diagnosed with ALS 2 1/2 years ago.  She has been so caring and the work she has done to raise money for a cure is unbelievable for someone 11 years old.  She is a special little girl that's for sure.  My friends are all amazed by her accomplishments and can't wait to see what she does as an adult.  I am very touched that her positive example has influenced her little brother Connor.  He is also raising money for the cause this year.  I am blessed to have such wonderful family and friends during this very difficult time." - Pam White


 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.