2012 Members of the Month
Katie O’Connell grew up in Woburn, MA. As the oldest of three children, she’s always been quite independent, content doing things on her own, and a bit of an old soul. You could often find her doing one of her all-time favorite things; sitting quietly with some arts and crafts, creating a masterpiece. She lived a normal childhood, during which she figure-skated, played soccer and softball, did gymnastics, and took dance classes. She spent her summers swimming like a fish at the Medford Boat Club on the Mystic Lakes, her winters building the coolest snow forts, and the Spring and Fall running around climbing trees, playing tag, and riding bikes with the neighborhood kids.
It wasn’t until middle school that Katie began to experience symptoms of narcolepsy. Thinking back, she believes the excessive daytime sleepiness (EDS) began when she was in 7th grade, as that is the first time she remembers falling asleep in class. Cataplexy followed soon thereafter, but was so slight that she didn’t think much of it. By 8th grade the sleepiness was more frequent, but still not bad enough for any of her teachers to contact her parents.
At the end of 8th grade Katie chose to attend Arlington Catholic (AC), a private high school in Arlington, MA. She was passing and was well-liked by her teachers, but she was constantly struggling to stay awake in class. When attending parent-teacher conferences at the end of Katie’s first semester at AC, it became obvious to her parents, Ken and Louise, that something wasn’t right. Thanks to her very persistent mother, Katie saw the right doctors and was diagnosed at Children’s Hospital Boston within a few months. She was 15 years old at the time.
Everyone in Katie’s life was grateful to have learned what the problem was, and that she was getting the treatment she needed. Unfortunately, that was only the beginning of the roller coaster ride that was about to commence. After two years at AC, Katie and her parents thought it was best for her to transfer to Woburn Memorial High School (WMHS) for various reasons. Katie would tell you that her high school years were nothing short of miserable… switching schools, academic obstacles, finding the right meds, not driving, lack of a social life, depression… It was overwhelming, to say the least.
After graduating high school in 2007, Katie went on to take some classes at Middlesex Community College (MCC) in Lowell, MA, in pursuit of an associate’s degree in liberal studies. After two semesters of poor academic performance she and her parents decided that she would discontinue her schooling for the time being. Over the next two years she continued working her part-time retail job, and eventually returned to MCC in the fall of 2010.
Unfortunately, this time around wouldn’t be much different than the last. Plagued by frustration, anxiety, and depression, Katie once again left school at the end of the 2011 Spring semester. She has always believed that college isn’t for everyone. However, it was the first time she ever thought that might be the case for herself.
With no idea where to go from there, she continued to work part-time. Not unlike many other narcoleptics, Katie’s social life had dwindled over time; something she attributes to not being able to drive. As a result she ended up spending most of her time alone, a great deal of which she found herself on her computer. It was then, during early spring 2011, that she had found a couple public narcolepsy support groups on Facebook. She began chatting with others, sharing information and support. It wasn’t long before her now good friends, Jessica and Shanna, reached out to her with invitations to join the smaller, private narcolepsy support groups that they each had created on Facebook. Katie thoroughly enjoyed the time she spent in these groups chatting, sharing research information, discussing the ups and downs of each other’s lives, and laughing about the silly things. Although she was at home in her room, alone, she didn’t feel alone. It was almost as if she was sitting with these people, her new friends, and chatting over coffee or something.
As a young person herself, Katie quickly began to take particular notice of the need for a place where young adults with narcolepsy could converse among themselves, separately from the rest of the narcolepsy population. So, she jumped on the opportunity to fill that void by creating another private Facebook group she named YAWN, which actually stands for Young Adults With Narcolepsy. The group recently exceeded the 100 member mark, and is always welcoming of more newcomers!
Although Katie isn’t certain about what kind of career she’d like for herself, there is one thing she’s quite sure of; she’s very much a “people-person” who has always had a passion for helping others. For this reason, she has made an effort to become involved in the narcolepsy community to benefit more than just herself. She is an integral part of her local support group, the New England Narcolepsy Support Group (NENSG); volunteered at NN’s booth at the Sleep 2012 meeting (an annual conference for researchers and physicians) in Boston, which took place in June this year; has lately been contributing to ‘The Network,’ NN’s quarterly newsletter; and most recently, Katie held a “Dining to Donate” event at Applebee’s restaurant in Woburn, MA, which raised a total of $106.00 to be donated to NN. Currently, she is working on plans for Boston’s first SLEEP WALK to be held in March!
Katie is now 24 years old, and works as a part-time hostess at Applebee’s. She still resides in Woburn with her parents, her brother and sister (when they are not living at school), and her beloved dog, Lola.
Besides advocating for narcolepsy awareness, Katie enjoys spending time putting her creativity to use making all kinds of crafts, getting to know her large extended family better, going out to comedy, variety, and burlesque shows in the city, enjoying live music, savoring good food and drinks with friends, and indulging in two of her guiltiest pleasures – ice cream and cheesecake!
Ann Austin was born and raised in the Midwest where she belonged to 4H, spent her summers working in corn fields and hanging out at the local swimming pool, and ice skated through winters on any surface that was frozen-over. She currently lives in St. Louis, Missouri where the summers are too hot and the winters aren’t quite cold enough!
At the age of eight, Ann experienced hypnogogic hallucinations, EDS, and automatic behavior. After a “daytime nap EEG”, performed at the Illinois State Mental Hospital, she was diagnosed as hyperactive and emotionally distressed. She waited 29 years for an accurate diagnosis.
Although she reported her sleepiness to several doctors over the years, her voice wasn’t really heard until 1998, when she fell asleep while walking on a treadmill. Soon thereafter, she was successfully diagnosed with narcolepsy!
Today, Ann works full time, teaching and developing curriculum for a healthcare-based computer software program. She has served on the Narcolepsy Network Board of Trustees, as Vice President and was the 2001 conference chair. She has attended every NN conference since 2000 where she often speaks or facilitates conference activities. As an outspoken advocate for sleep health and sleep disorders awareness, she has spoken at the Narcolepsy Education Day at Mercy Children’s Hospital in Kansas City, Missouri the past two years. From 2008 – 2010, she served a three-year appointment on the National Institutes of Health, Sleep Disorders Research Advisory Board and helped craft the current five-year research plan.
In 2006, while in Washington D.C. to speak at the “Women and Sleep” conference, she advocated on behalf of a young student with narcolepsy – “Alexander”, who was the target of discrimination at his grade school in Maryland. Working with Alexander’s family, a few Narcolepsy Network members, the Executive Director and Medical Advisory Board, she delivered compelling testimony, paving the way for Alexander’s admission to a school with accommodations necessary for academic and social success. Ann considers this one of the most important things that she has done in her life and firmly believes that advocacy starts within each PWN and with their own story.
Ann stays active by dancing Argentine Tango, Lindy Hop and English Contra and she loves to make costumes! While on a visit to Buenos Aires, Argentina in 2010, Ann connected with five PWN who envisioned a patient organization in Argentina. She shared how Narcolepsy Network is organized, reviewed their legal documents, and helped connect the small group with members of Narcolepsy Network. A year later, the Narcolepsia, sindrome de Gelineau en Argentina was chartered! Ann will return to Buenos Aires this spring to dance and visit with her Argentine friends!
Check out Ann on Health.com - “Why you may need a second opinion”, and at GatewayNia.com. Find her Halloween “looks” on her Facebook page!
Richard Ming Lai. Ming is a registered nurse, a permaculturist, and an activist. He has had symptoms of narcolepsy since he was in junior high school. He fell asleep in classes, missed a lot of school, and felt minimally normal. In 2010 he had fun on a self supported bicycle trip despite having a sleepy history. Ming went from his front door in the flatlands in Sacramento through the Sierra Foothills, the high desert of Eastern Oregon, into the Clearwater National Forest of Idaho then into Glacier National Park in Montana, and over the continental divide of the United States. It was beautiful. Back in Sacramento he began to have increased sleepiness. He began looking for people with a diagnosis of narcolepsy, but was unable to find in-person support groups. He began searching to share the skills that he was gaining, which might prove useful to his sleepy younger son or other people who have symptoms of excessive daytime sleepiness and narcolepsy. Ming is writing about the trip here: http://rkmlai.LiveJournal.com/
Ming has been enormously helpful to the Narcolepsy Network conference committee and all can say hello to him in Cleveland, Ohio.
He now has a zine “With Intention: a zine about a person with narcolepsy” and he is donating copies to the NN conference raffle.
Jerry Stilkind. Jerry went hiking in the White Mountains of New Hampshire on the way to his second NN annual conference seven years ago in Boston, slipped on some ice and broke his right wrist. Two years after that he went to San Diego several days before the NN conference, intending to drive around southern California. Wildfires closed the roads leading to and out of
the city when he arrived at the airport, hotels in the city were fully booked and he wound up sleeping on a terminal floor for a few days.
Is there a moral to these stories? Of course not. Except that stuff can happen here, there and anywhere and didn’t affect his determination to attend our meetings. “Narcolepsy hurts. It can kill your job, make education a daily grind, stress a marriage, order your life around naps, take one medication after another in a hard drive to keep on moving. But, coming to a conference means you can hear about research and different ways of using medications, food and exercise that may be of help to you. In the people around you and the professionals talking to us you see the big circle we are all in and the determination not to stay put”.
Further, more and more youngsters and teens seem to be coming to our conferences and growing in numbers of people with narcolepsy. Seeing
them hurts a lot. Jerry coped well in his earlier years by broadcasting. He was a night person and getting into a job that had daily deadlines –
newspapers and wire services. He thinks he was not hit hard by narcolepsy until about 20 years ago, having retired 10 years ago or so. But seeing
young people with full blown symptoms on some of the strong medications he now takes moves him to wonder how they will be able to cope. The
conference helps because it and NN focus on the medical, legal and economic problems that those with narcolepsy face. We have to support
this work in order to help lift some of the burdens. There really is no choice if you care about the next generation.
Jerry’s health is fairly decent for a 78-year-old transplant from his beloved New York City to Washington, DC. He says: “I am almost as tall as I used to be, almost as dark as I used to be and almost as handsome as I used to be. I gladly led and now gladly follow in a narcolepsy support group in Washington. I can gladly assert, because I am not too tired and depressed at the moment, that I have a good sense of humor, do a lot of
dancing, reading and going to the theater. I would feel even better if many of you would say hello in Cleveland”.
Karen Rorie is Narcolepsy Network’s newly hired Communications Coordinator. She grew up in Rochester, Minnesota and earned a BA in journalism from Drake University in Des Moines, Iowa. Karen has worked for a number of non-profit and health care organizations in Seattle and Minneapolis. In 2006, she moved back to her hometown, where she she is a freelance writer and graphic designer, and the event manager and “Jill of All Trades” at Sontes Restaurant.
In her spare time, Karen enjoys theatre, dance, pilates, reading, decorating, travel and making jewelry. In September she will spend two weeks in Italy learning the ancient metalworking technique of chasing and repousse. She and her cats Guinness and Gus live in a 100-year-old house, which Karen hopes will one day be completely repaired, organized, and have a weed-free yard.
We are very lucky to have Karen “on board”. Karen is definitely a “Jill of All Trades” and has proven to be a very talented lady!
Amy M. Conley is our July Member of the Month. Amy is a graphic designer and works about 5-10 hours per week as an office assistant in the Rhode Island office. She helps Joyce do various tasks dealing with membership projects, processing the Educational Orders, and data entry. Amy helps design various brochures and conference flyers for the Narcolepsy Network and has attended many conferences, helping out at the Registration Desk and other locations. Amy is very creative and even though Amy is not a loud presence, she is very helpful during our conferences and throughout the year. Amy is married, lives in Connecticut, and works full-time as a graphic designer for a printing company in Providence, Rhode Island.
Marcia Coy is the Volunteer of the Month for June. Marcia started volunteering for us years ago and she is not only a lovely person, but she is also very creative, organized and reliable. Marcia is a quiet presence, and she is full of great ideas.
She is the author of the “Manic Ramblings of Marcianna” blog and founder of Dormez-Vous Studios. She has volunteered with Narcolepsy Network serving on four conference committees earning the Ruth Justice Nebus Volunteer of the Year Award for 2011. She has also written articles for their quarterly publication “The Network”, and served on that and other committees as well. An avid Narcolepsy advocate, especially for pediatrics, she has organized awareness events and been a public speaker for K-12 schools, college nursing students, and other organizations.
Marcia is looking to expand her advocacy, with Dormez-Vous Studios, a non profit aimed at treating sociological and psychological issues that are common with pediatric sleep problems with the use of art therapy. She hopes to work with other organizations as well to help relay the importance of early diagnosis of narcolepsy and other sleep disorders in children.
@o0Marcianna0o or @ProjectBedtime on Twitter.
Sarah DiDavide is a Vice President of Narcolepsy Network. Her path to narcolepsy advocacy began when her husband was diagnosed with Narcolepsy during his first year of law school in 2005. The diagnosis enabled them to find a new world of narcolepsy supporters online and through the Narcolepsy Network (NN).
Sarah is very energetic, extremely organized and gets a lot done. One of the reasons why she is nominated for “Member of the Month” this month is that she organized a huge walk for Suddenly Sleepy Saturday during National Sleep Awareness Week in Chicago on a very short notice in March. Sarah is doing a lot for support, raising awareness and she is an enormously effective advocate for narcolepsy!
Jason and Sarah attended their first NN conference in 2008 and they both thought it was an amazing experience. One of her primary goals is to help other people better understand narcolepsy, and to start a patient support service that will help people navigate their clinical care more effectively and give them tools to better represent themselves. Sarah is working on many projects for Narcolepsy Network. It is her goal in the next year to have a more organized procedure for members interested in starting support groups and in the next five years to have a support group in each state. Sarah was excited to organize and host the first Sleep Walk Chicago this year and looks forward to planning next years. “We are currently part of an amazing support group in Chicago, Midwest Narcolepsy Support Group, I hope that every person with Narcolepsy can have the same opportunity to create a bond with people who really understand them like we have with our other group members.”
Sarah lives in Chicago, Il. with her husband Jason and their 1 year old daughter Genevieve.
Kevin Boyle is happily married to his wife, Jo, for 18 years, and they have 5 kids between them. Kevin grew up in Deerfield, in the Chicago area, and graduated from NIU with degrees in Psychology and Anthropology. He moved to Tucson where he has been in the food service business for all of his career, including 32 years in sales and sales management at Shamrock Foods Company, distributing food and supplies to restaurants, hotels, healthcare, schools, etc. He enjoys traveling, great food, all types of music, University of AZ basketball, sports, movies and reading. Kevin’s daughter Caitlin has very severe narcolepsy, especially the EDS, so they are trying to get a support group going in the Tucson area, and they are trying to educate and inform others about the condition. They hosted a booth at the Tucson Festival of Books this past weekend, which was very successful and they met about 15 new people with narcolepsy and their families who want to join their support group.