Melrose Free Press - May 3, 2007
Editorial: Raising Awareness, continued
by Carol Brooks Ball
Melrose - The hectic pace of the news business is such that, as reporters and editors, we rarely have time to go back and provide updates on people whose stories we’ve shared with readers.
Fortunately, that’s not the case with Melrosians Pam and Marc Gobiel and their niece, Ashley D’Orlando. In a Free Press CitySide feature from August 2006, we first told readers about Pam Gobiel’s ongoing struggle with chronic fatigue syndrome, and the online business that her then 11-year-old niece, D’Orlando, launched to raise awareness of her aunt’s condition.
Called Slamdunks Apparel, the online business [www.slamdunksApparel.com] is still bringing in daily sales of CFIDS-related merchandise including T-Shirts, magnets, aprons, note cards mugs, buttons, tote bags and more. D’Orlando donates $1 per item, or 10 percent of her total merchandise sales, to the CFIDS Association of America in North Carolina (CFIDS stands for chronic fatigue and immune dysfunction syndrome). Last year, after the Free Press story about D’Orlando and her online business, Slamdunks sales began flourishing. Since then, D’Orlando has been featured on Web sites and blogs around the world, both CFIS-related and “girl empowerment” sites such as “Smart Girls Rock,” and “Girls Can’t WHAT?”
Today, a sixth-grade student at the Beebe School campus of the Melrose Middle School, D’Orlando is a saavy young businesswoman who has been recognized for her work in raising awareness of her aunt’s incurable condition by the CFIDS Association of America, as well as several international CFIDS organizations.
On Friday, May 11, the Gobiels and D’Orlando will fly to Washington, DC, where they’ll enjoy the sites for a few days while preparing for the CFIDS Association’s Lobby Day on Capitol Hill on Tuesday, May 15.
“We’re going to Washington, DC to attend Lobby Day with about 80 [CFIDS] people from across the country,” said Pam Gobiel. “The president of the CFIDS Association of America, Kimberly McCleary, invited us because she wanted to meet Ashley.”
Gobiel said they hope to meet with Sen. Kennedy and several other people while on the Hill. In the meantime, they’ll spend the day Monday, May 14, in a mandatory training session to learn how to speak before a Congressional health care delegation. Gobiel said they’ll be taught how to explain to members of Congress what is needed for CFIDS research and treatment, including what funding is needed and what, specifically, Congress needs to ask for from the National Institutes of Health (NIH) and the Centers for Disease Control (CDC).
As for Pam Gobiel, the news of her health, almost one year later, isn’t really good news.
“My illness is about the same,” she said. “There is no cure.” In January, Pam and Marc attended the International Association for Control Fatigue Syndromes (IACFS) conference and met top doctors from around the world. The first day was good for Pam — meeting people and talking about her condition as well as doing advocacy work for CFIDS — but she spent the next two days in bed, sick, recovering from the exertion. Such is a day in the life of a person with chronic fatigue and/or immune dysfunction syndrome.
But, ever the proud aunt, Gobiel said, “There were anywhere from 600-800 people attending the conference, and the whole time we wore our name badges, which also said ‘Slamdunks’ — we got lots of interest!”
Incidentally, the Gobiels and D’Orlando picked an appropriate time to be in Washington to advocate for more awareness and funding for CFIDS: Saturday, May 12 is the 15th annual, national CFS/CFIDS Awareness Day.
For more information on chronic fatigue and immune dysfunction syndrome, visit www.cfids.org.