Since 2001, the SWF has set aside a special time for Partners to participate in grassroots education and fundraising. Each year in May, SWF Partners focus on doing even one small activity to bring SWS/PWS/KT to the attention of their communities, schools, businesses, neighbors and relatives. These are some of last year's achievements.

May 1-31, 2008

Each year we dedicated a whole month to encouraging Partners to do "whatever you can, wherever you are" to bring Sturge-Weber syndrome, Port Wine Stain, and Klippel-Trenaunay to the forefront in the community, school and office.

A new poster, featuring five SWF families, was distributed to all registered Partners in the US. The SWF office sent out quantities of brochures and Check It Out cards.

This is just a sampling of how we covered the map, and how our Partners brought education and awareness to their own communities.

Ida Heck of Maryland bought and sold tickets to a special Bowie Baysox benefit baseball game at which her daughter Kaitlyn and her friend sang the National Anthem. On top of that, the Baysox won a double header that night.

Corrin Campbell worked on many fronts in Washington state. She designed and made lovely beaded bookmarks which she sold to friends and family. She put posters and information packets in the pediatrician's office, the neurologist office and the PT/OT office. She emailed all her contacts, posted on Myspace and even had time to meet with another mom while their girls were at the dermatologist office for laser treatments.

In Maryland - Robert McDonald, son of Lottie and the late George McDonald, headlined a concert featuring his band Introspect. More than 200 people gathered to honor the memory of George and to listen to Gospel, Jazz, R&B, Rock and poetry and, of course, witness the educational work of the SWF.

Nicole Philbrook arranged for a Governor's Proclamation in Maine which twins JoHannah and Carley proudly display.

Kerri Wehner brought a presentation to 3 year old Kendra's preschool in NJ and reached about 50 parents and teachers.

The Bayse family of Charlotte, NC held a company cook-out at E-Trade Financial where Joe works.

James Peifer of Michigan had a special benefit luncheon at work (Social Security Administration) and son Bradley was the guest of honor.

Melissa McCarty of Alabama posted and distributed many copies of our posters and flyers to the local health department, other health-oriented organizations, schools and offices. She says "I used to get odd looks when I tried to explain SWS. This time I saw light bulbs!"

Tammy Massaro of Tennessee, mom of Cody Allen, created a display for her workplace (CURVES) and for her church, and raised funds, awareness and compassion.

Trish Bourne of MA held a raffle at her Trisha's Tots Dance Studio recital. The lucky little dancer won a semester of free dance lessons and the SWF won many new friends and much support.

Maggie Brown of NJ, ran a lemonade stand in honor of her big brother David.

Larry Gelfund made a presentation to WEB, the school's leadership class at Highland Middle School in Michigan where Diane Gelfund teaches. Thus fired up, the class then embarked on its annual carnation sale, which it has been doing for the last 3 years as a tribute to the late Noel Gelfund.

In NYC, Linda Larach-Cohen was invited by 2 ½ year old Marco's Early Intervention provider, the Visiting Nurse Service of NY, to be one of the speakers at their family luncheon. In addition to sharing her experience with the VNS, and being an advocate for your child, Linda spoke about the importance of the SWF "team" in her family's journey. She was able to distribute our Check It Out cards to the attendees.

In Chicago, Megan Tarczynski was interviewed by ABC 7 for a TV interview that was aired on July 5th.

Dreama West, grandmom of 3 ½ year old Hayden who lives in Arizona, is with KPCL radio in Farmington, NM. She interviewed Karen Ball by phone and the conversation was broadcast in May.

Linda Sobolow of Long Island, NY is grandmom of Noah Broklawski and works at the Syosset Central School District Pupil Personnel Services. That's a perfect combination for getting SWF information into the right hands (and minds).

Lasette Nunes of NJ, mom of Aidan who is 3 ½, got her local Boy Scouts mobilized and had a Bake Sale, A lemonade stand was rained out in May, but happened around July 4th.

Michael and Michelle Wanger graciously opened their home in Belleair, Florida on May 5 to more than 100 invited guests for an elegant yet informal supper party, complete with a generous collection of donated silent auction items. Just a week before, a local dress shop, Oilily, held a shopping spree with a percentage of profits coming to the SWF.

Heather and Marc Bochenek, organized a Bingo Night at Fox Elementary School in Michigan where Heather is a fifth grade teacher. Together with 6 year old Madelyn and little sister Mya, and many friends and school staff, they put together a stellar evening with door prizes, basket raffles, food, prizes and lots of fun. They sold Believe bracelets and the SWF kids coloring book

If you would like to ask person-to-person questions, please call us at 1-800-627-5482 or email Bonnie Ayers at bayers@sturge-weber.org.

If you have been a volunteer before, you know how rewarding Month of Awareness can be. We would welcome your participation again.

A Tasty Treat - we are offering a Lemonade Stand in a Kit so that you and your kids can Stand Up for the SWF. This is a good family activity complete with instructions on how to organize your event, how to get donations of supplies, suggestions for posters and banners, even a checkered tablecloth and balloons. This would be a great activity for parents and children. And it doesn't have to be just lemonade. The same techniques work for a bake sale.

Kids - to request your kit, click here.

Parents- for guidelines and necessary forms, click here.

Extra supplies: brochure, poster

Click here to see other Month of Awareness Events

Click below to download Printed forms, sample letters and tips.