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NOAH
Board of Directors

The Board of Directors is responsible for the overall policies, direction, and management of NOAH. Duties shall include, but not be limited to, the following: leadership, policy formulation, short and long-range planning, fundraising, and fiscal integrity. Members of the Board must choose or be assigned specific duties and responsibilities by the President, including, but not limited to, active service on committees and projects.  In order for a Board member to be in good standing, he or she is expected to contribute a minimum of ten hours of active service every year served in addition to Board meeting attendance. Board meeting and conference attendance is not included in the minimum number of service hours to be in good standing.

Mike McGowan

Mike McGowan, Executive Director
mmcgowan@albinism.org

Mike McGowan is a person with albinism who has served as NOAH’s President since 2001. Mike has attended the past eight NOAH conferences. He holds a Bachelor of Science in Political Science from Loyola University of Chicago and a Master of Science in Management of Public Service from DePaul University. Mike has been employed since 1995 as Director of Information Technology for the Chief Judge of the Cook County, IL Circuit Court, the second largest court system in the country. In addition to his duties and involvement with NOAH, Mike has served on the capital development committee and centennial committee of his church, and on his local private school board. Mike has served on NOAH’s Board of Directors since 1995, as Secretary from 1995 to 1997, as 2008 Conference Committee Chair, and on the Albinism Awareness Committee, prior Conference Committees, Advocacy Committee, as an Adult Day organizer, Family Camp organizer and Bowl-a-Thon team leader since inception of the program. Mike has been involved in day-to-day operation and management of NOAH and all projects, activities and committees since 2001. He is also active in the Northern Illinois Chapter of NOAH which has been responsible for the majority of NOAH Chapter fundraising and activities. Mike lives in Chicago with his wife. His son attends college in Washington, DC.

Tim Lauglin

Timothy Laughlin
tlaughlin@albinism.org

Timothy Laughlin is a person with albinism and the parent of two children with albinism who lives in Loudon, NH. He is a previous NOAH board member, past treasurer, and has served on past Conference and Internet Committees. Tim is responsible for the launch and management of NOAH’s online store, including all order fulfillments. Tim is a business owner of an information technology company founded in 1999.

Dan Oates

Dan Oates
doates@albinism.org

Dan Oates has been a presenter at the 2008 and 2010 NOAH National Conferences and has worked in the field of low vision for 30 years. Dan has had a special interest in albinism for many years and organized the first-ever Family Albinism Day in WV in 2009. He has a master’s in Education from the University of Pittsburgh and holds state and national certifications in teaching the visually impaired, orientation and mobility and low vision therapy. He is currently employed as an Educational Outreach Specialist at the West Virginia Schools for the Deaf and the Blind. Dan has been the coordinator of Space Camp for Interested Visually Impaired Students (SCI-VIS) in Huntsville, AL for 21 years and has been instrumental in bringing over 2,300 students to spend a week in space. He was selected to the inaugural class of the Space Camp Hall of Fame in 2007.

Kelsey Thompson

Kelsey Thompson, Secretary
kthompson@albinism.org

Kelsey Thompson is a person with albinism who has been a NOAH member since its foundation and has attended nine NOAH conferences. Kelsey is NOAH's Secretary, Editorial Committee Chairperson and Scholarship Committee Co-Chair; she has served on NOAH’s Board of Directors since 2005 and has also been involved with the Board of Scientific Advisors. As the editor of Albinism Insight/NOAH News from 2000 to 2008, Kelsey helped to establish a regular publication schedule and organized the new design that transformed the publication from a black-and-white newsletter to a full-color magazine.
Kelsey holds a Bachelor of Science in Psychology from DePaul University and a Master of Science in Rehabilitation Counseling from the Illinois Institute of Technology (IIT). She is a nationally Certified Rehabilitation Counselor (CRC), employed at the Chicago Lighthouse since 2006. Before that, she worked as a Quality Assurance Analyst for Epic Systems Corp. in Madison, WI. Kelsey remains active with alumni and rehab counseling initiatives at IIT and holds a strong interest in psychological and neuropsychological research.
When she's not at her job or working on a NOAH project, Kelsey also volunteers at the Red Door Animal Shelter, a no-kill shelter for rabbits, cats and dogs in the north Chicago neighborhood of Rogers Park. She and her husband, James, live in Chicago and enjoy compulsive book-buying, traveling and watching The Simpsons.

Brooke Fox

Brooke Fox
bfox@albinism.org

Brooke Fox is a person with albinism. She has been a NOAH member since 2002 and has served on the Board of Directors since 2006. Brooke has a degree in music and songwriting, and has recorded two albums of her own music. She currently does freelance music and design work including running a home recording studio with her husband Kurt Gellersted. Brooke is active in NYC NOAH chapter, volunteered for interviews for the DaVinci Code campaign, including the Neil Cavuto show on Fox News, provided entertainment and participated in 2002, 2006 and 2008 conference programs, was a volunteer counselor at 2005 NOAH Family Camp and performed at the NOAH PA benefit in 2006. Brooke is currently vice president of the Performing Arts division of the NFB, and has served on its board for two years. She has also chaired the NY songwriter forum for the local chapter of the Berklee College of Music alumni association. Brooke lives with her husband in New York.

Chris Kramer

Chris Kramer
ckramer@albinism.org

Chris Kramer is the parent of two young children with albinism. She has been to the past two NOAH conferences, has been active in the NOAH Northern Virginia chapter, and helped run the silent auction in Las Vegas. She holds a masters degree in communication disorders from the University of Arkansas and a bachelors degree in early elementary and early childhood education from the College of Charleston. Chris has been employed as a speech pathologist in Virginia, Maryland, Missouri, and Colorado. Her husband is in the United States Air Force. Chris has worked with several other non-profit organizations including Compassion International, Love without Boundaries, Capitol Area Families with Children from China, Share International, and church. Chris lives in Virginia.

Donna Appell

Donna Appell, Vice-chair
dappell@albinism.org

Donna Appell is the mother of a child with albinism. Donna is the longest serving member of the NOAH Board of Directors. She is a registered nurse having completed a Bachelor of Science in Nursing at Molloy College and worked for 22 years in an Open Heart Intensive Care Unit. Donna is the founder and president of the Hermansky-Pudlak Syndrome Network. Donna is a current member NOAH Board of Scientific Advisors. Donna has been a presenter at low vision and genetics conferences 1998-present, and presented at the 2006 and 2008 NOAH Conferences. Donna was a member of the board of the Genetic Alliance in Washington D.C. She was appointed to the Public Advisory Roundtable of the American Thoracic Society (ATS) and just completed her two year term as Chairperson. She received the ATS Presidential Commendation for her work with lung disease and was appointed to the ATS International Lung Health committee. She is the Education Coordinator for Reach Out for Youth with Ileitis and Colitis. Donna works very closely with the National Institutes of Health (NIH) in Bethesda, Maryland, having been instrumental in developing research for HPS. She has recently helped with the new research protocol for Albinism under Dr. David Adams at NIH and remains a resource person to NOAH for recruitment. Donna lives with her husband and two children on Long Island, New York.

Doug DuBois

Doug DuBois
ddubois@albinism.org

Doug DuBois is the parent of two children with albinism. He has been a NOAH member since 2000 and has served on the NOAH Board of Directors since 2006. Doug has attended 4 conferences. He holds degrees in philosophy and political science. For 19 years, Doug has been employed with the General Services Administration, currently as a Contract Management Program Analyst specializing in small business issues. Doug helped organize and participates in the Northern VA chapter of NOAH, was Virginia coordinator for 2nd Annual NOAH Bowl-a-thon, helped organize the NOAH Board dinner and Northern VA meeting in Arlington, VA in 2004 and served on the 2010 conference site selection committee. Doug has served on the Arlington Neighborhood Conservation Advisory Committee; as an officer of the Highlands Property Owners Association; as a math tutor, volunteer and charity drive coordinator for Beacon House Ministries in Washington, DC; is active in his local PTA; and currently sits on the county-wide Advisory Committee for Instruction of his local school district. Doug lives with his wife and two children in the Washington, DC area.

JaNae Epps

Ja-Nae Epps
jepps@albinism.org

Ja-Nae Epps is a person with albinism. She has been a NOAH member since 1998, and has has been a member of NOAH’s Board of Directors since 2007. Ja-Nae holds a Master of Arts in Strategic Communication and Leadership. She is employed with the University of South Carolina as a Visitor Services, Operations and Communications Manager. Ja-Nae serves on NOAH’s conference committee, and with the NOAH People of Color Special Interest Group. Ja-Nae is also editor of Albinism Insight. She lives in the Columbia, SC area.

Carol Carley

Carol Carley
ccarley@albinism.org

Carol Carley is a person with albinism. She has been a NOAH member since 1992 and attended all conferences since then (8). Carol has served on NOAH’s Board of Directors since 2008. She holds a bachelors degree in elementary education from Adelphi University and a Masters in Special Education from Hofstra University. Carol is a Special Education Teaching Assistant in the New York area, supporting students with special needs in the Inclusion Program (regular classroom). She has volunteered for both NOAH Family Camps since its inception in 2005, served on the Kids conference committee for the Las Vegas NOAH Conference and worked on NOAH’s Parent Book project. Carol has also volunteered at HPS Network Conferences, helping with childcare. Carol lives in the New York area.

Margaret Mary

Margaret Mary Campbell
mcampbell@albinism.org

Margaret Mary Campbell is a person with albinism. She has been a NOAH member since 2000, a member of NOAH’s Board of Directors since 2004, and has attended four NOAH National Conferences. Margaret Mary also attended a mini-conference in Phoenix, and organized a mini-conference in Scranton, PA. She holds a Bachelor of Arts in Elementary Education from Marywood College and a master’s equivalent from Penn State (Dunmore extension). She is a certified peer mediator grades K-5, and taught elementary school from 1967-1999. Margaret Mary helped initiate NOAH summer camps in 2005. She also organized a number of activities at NOAH’s Twentieth Year Celebration in Philadelphia in 2004. She is active in fundraising for NOAH through Care to Share Days at a local mercantile, and organized two local bowl-a-thons. Margaret Mary has also held many positions and been active for forty years in her church and has served as an officer for the Red Hat Cupcakes. Margaret Mary lives in Scranton, PA.

Brandi Green

Brandi Green
bgreen@albinism.org

Brandi Green is a person of color with albinism who resides in Silver Spring, MD. She joined NOAH in 2004 and facilitated the Diversity Panel at the 2010 National Conference and served on the Adult Social Programming Committee. She has co-facilitated sessions at previous conferences and contributes regularly to Albinism InSight. Brandi is also active in the D.C. NOAH group. This Chicago, IL native holds a bachelor’s degree in English from Grinnell College and holds a degree in Multicultural Communication from DePaul University. Brandi is currently employed with the National Association of Attorneys General as the Communications Assistant. In her spare time, Brandi enjoys reading, taking exercise classes, volunteering and creative writing.

Scott Gibson

Scott Gibson
sgibson@albinism.org

Scott Gibson is a person with albinism. He has been a member of NOAH since approximately 1990 and attended nine conferences. Scott has served as Vice President and on the Bylaws and Policies Committee. He has coursework in computer science, management, massage and holds a bartending certificate. Scott has been employed with the City of Kitchener, Ontario, CA for more than 20 years. He has also been a part-time employee at a local grocer, department store, restaurant, and park conference center. In addition to being behind the scenes and on the board of NOAH for many years, Scott has been actively involved in his local Optimist Club since 1992 serving as President and Chair of several committees, and has been a member of a model train club since 1991. Scott lives with his wife Cindy, who has albinism, and their two children outside Toronto.

Pam

Pam McGonigle, At Large
pmcgonigle@albinism.org

Pam McGonigle is a person with albinism and a parent by adoption of a child with albinism who is from China. Pam has been a NOAH member since 2007 and attended NOAH family camp in 2009 with her husband John and their son JT. Pam is a four-time Paralympian in track and field. She participated in four Paralympic Games starting with the 1992 Paralympic Games in Barcelona where she captured a gold medal in the 3000m as well as two bronze medals in the 800m and 1500m events. Pam currently serves an as advisory board member for Camp Abilities West Chester and is a member of the Pennsylvania Department of Education, Bureau of Special Education, Pennsylvania Advisory Committee for Adapted Physical Education and serves as a parent liaison for the School District of Haverford Township Department of Pupil Services. Pam serves on the Executive Committee for NOAH as an At-Large representative as well as Chairs the Financial Development Committee. In her spare time her and her family enjoys tandem biking, running, hiking, and just about anything that has to do with sports.

Michelle

Michelle O'Connor, Treasurer
moconnor@albinism.org

Michelle O’Connor has a 12-year old son with albinism and lives in Crystal Lake, IL. Michelle has been a NOAH member since 1998 and has attended five NOAH National Conferences. She serves on NOAH’s Board of Directors and is a former treasurer. Michelle is responsible for NOAH’s Welcome Basket Program, is chair of NOAH’s Budget and Finance Committee, has done programming for and administered NOAH’s past two Kids’ Conferences and is an active member of NOAH’s Northern Illinois Chapter. Michelle holds a bachelor’s degree in Liberal Arts from the Univ. of Illinois, and was previously employed as a Finance Manager for Anderson Consulting, n/k/a Accenture. Michelle is also an active member of her children’s parent-teacher organization and works as a substitute teacher.

Sheila

Sheila Adamo, Chair
sadamo@albinism.org

Sheila Adamo is the parent of a child with albinism and lives in Naperville, IL. She has been a NOAH member since 1998 and currently serves on NOAH’s Board of Directors. Sheila serves on the Development Committee, the Conference Planning Committee, the Strategic Planning Committee and the Rapid Response Team. She assisted in planning the last two conferences with an emphasis on the kids’ program and discussion groups. Sheila organized the Mothers’ Retreat and hopes to organize more retreats in the future. She has been active in local advocacy issues, organized many social gatherings and assisted with Northern Illinois fundraising events. Sheila has been the driving force behind NOAH’s five Bowl-a-thons. She is a licensed clinical social worker with an MSW from the University of Illinois at Chicago and holds a certification for alcohol and drug abuse counseling.

 

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NOAH
The National Organization for Albinism and Hypopigmentation
PO Box 959, East Hampstead, NH 03826-0959
Phone: 800 473-2310 (US and Canada) Phone: 603 887-2310 Fax: 800-648-2310
http://www.albinism.org

If you have any questions or comments, please e-mail us at webmaster@albinism.org

NOAH is a volunteer organization for persons and families involved with the condition of albinism. It does not diagnose, treat, or provide genetic counseling. It is involved in self-help, while trying to promote research and education.

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