Raising Awareness for RLS
Donna Payne of Westerose, Alta., has been using her beautiful garden to host many parties, but her favourite event is the one that raises awareness about Restless Leg Syndrome (RLS). Find her story in the September issue of More of Our Canada.
Donna and Trevor
Donna Payne does not live with RLS – but her son does. Restless legs syndrome has had a profound impact on both lives, as it often does within families. It did not take long for Donna to realize her son Trevor, now in his 40’s, needed more than support. She realized that to best fight back against her son’s RLS, she would have to also raise awareness and raise funds for research. It was after this realization she had a creative idea:
“I felt I could raise some donations by inviting women to a garden party in my yard, which is located on a beautiful acreage in rural Alberta,” Donna explained. “Though I have only joined with the RLS Foundation through my son who is severely stricken with this unpleasant disorder, I wanted to walk in step with the Foundation’s efforts.”
Donna soon discovered walking in step with the Foundation’s awareness progress would be as easy as One Step at a Time. Though One Step at a Time was set to launch in September for RLS Awareness Week, Donna set her garden party for July 26, 2009. This made her the first member of the RLS Community to complete an awareness event for the new campaign.
“This is a really new endeavor for me,” Donna told the Foundation before her event. “I don’t seem to be able to do enough to make my son more comfortable, so I hoped that by doing some fundraising he might get relief through the success of the research being done. And research costs money. I am finding this event to be a lot of work and a big expense, but I keep telling myself that it’s better than sending only a donation as it brings awareness to the public,” she said as of early July. Donna’s idea was unique as far as an awareness event. She planned to hold a garden party consisting of a luncheon with sandwiches and desserts, tables decorated with summer colors, a short talk on RLS, and piano entertainment by a local musician. Donna also planned for each guest to leave with a small gift.
Donna encouraged guests to enjoy the yard and walk along the many paths, gardens, and potting sheds on the acreage in order to feel the peace and tranquility, enjoy the scents and sounds only a rural setting can provide. Once Donna had developed her idea down to the last detail, she sent out hand-written invitations to 75 women in her area. Her dedication paid off. Donna says of her event, “The Garden Party was a huge success!
Talking about RLS
Forty women attended, dressed in summer attire, many with hats. It was a gorgeous day. We started by serving Sangria to guests as they arrived. I had lots of help in the kitchen so dainty sandwiches were always served fresh. Lots of sweet things were available from chocolate dipped strawberries to tarts, squares, cookies, and fudge.
I spent some time talking to the women about RLS, how it has affected my son, and how their donations would help in finding a cure for this debilitating condition and that talking about it would increase the awareness it needs. I was surprised to find many people knew of the sensations, but did not know what it was called. One woman’s husband was seeing a doctor in a few days with the very symptoms I described! She said she felt chills run through her when she heard the name.” In case anyone with RLS attended her event Donna offered to meet with them anytime that suited them. It is always important when suffering any illness to know you are not alone.
Fund raising success!
Before the event concluded, a reporter from the local paper came and took pictures. Donna’s dream became a reality when she found out more than $2000 for the RLS Foundation had been collected. She exclaimed, “That’s a lot from so few people. We are very proud of our community!” It was not long after the success of this Canadian garden party that other volunteers and members of the RLS community gathered to talk about the One Step at a Time campaign. Donna joined in with a voice of encouragement. Everyone felt the shine of her success as they talked over other ideas to raise awareness and funds. As for her garden party, Donna said it best when she proclaimed, “I would be pleased to offer my experience to anyone who wants to try it. I know there are ways to make it simpler as well as more elaborate. It really was a pleasant way to raise money and everyone who attended said they had a good time and were glad to learn about RLS. I can only hope this will encourage them to be generous in their donations to the RLS Foundation.”
Other Garden Party Years
2010: Another successful Garden Party (Hawaiian Theme) was held by Donna and over $3000 was received and sent to the RLS Foundation.
2011 was a tough year for Donna with her son, he was experiencing his RLS throughout his body and finding himself unable to do many of the things he wanted to do so Donna and her husband, Matt took care of his children a lot and helped in other ways that took time away from preparing for another Garden Party.
Theme for 2012
2012 This years theme was an English Garden Party. We had about 60 women attending dressed in favorite frocks and hats. It was really something to see. We went all out and served them on China tea cups and lunch plates. We had men with white shirts and bow ties serving hot tea, minty lemonade, dainty sandwiches and desserts.
Favorite local musician, Barb Myers played throughout the afternoon and sang some special songs. A number of the servers performed a “flash” to the Beatles song “In an Octopus’s Garden”. I spoke about RLS, describing how debilitating it can be and how it affects children. Dr. Ronna Jevne spoke about “HOPE” and talked about the book she has written called “Tea and the Inner Me”.
To have a yard in which to hold these Garden Parties in a privilege and to have volunteers as dedicated to their success is a blessing. Comments from the women were all positive and the success as a fundraiser was more than we hoped. We raised around $5,000 almost double other years.
I am very proud of my small community and their generosity and hope my husband and I can continue to advocate for those suffering RLS. RLS is getting a name change to Willis-Ekbom Disease so it has a name that people will not make fun of.