Where Were Been, Where Were Going

Sarah E. Kucharski Founder, FMD Chat

October 9, 2011 - Founded facebook.com/fmdchat twitter.com/fmdchat

Feb. 29 - World Rare Disease Day fmdchat.org website launch

Annual, world-wide, awareness-raising event. rarediseaseday.org

March - What is FMD? poster mailed to various doctors with known interest in FMD

April - FMD Chat partners with CoRDS free, online rare disease registry

Establishing a central registry of individuals with confirmed diagnoses of any rare diseases is an innovative way to accelerate rare disease research. Researchers nationwide with the appropriate approval can have access to de-identified clinical information from the CoRDS registry that may be helpful to their research.

May - Doctors 2.0 & You in Paris FMD education from patient perspective

June - NeedyMeds Prescription Cards free, discount card for those w/o insurance June - FMD Chat incorporated in NC nonprofit organization status

June - FMD Chat at HealthCamp, The Walking Gallery four minutes of FMD ed & Regina Holliday

July - FMD Awareness Day patient-created red beads for awareness

August - FMD Chat partners with RareConnect international online community created via NORD and EURORDIS

August - FMD Chat meets MedStartr goal

Ileana Balcu Brett Berliner Lisa Fields Ben Leisen Noah Leisen Ross Martin Nora Miller Casey Quinlan Amanda Singletary Mary Casey Sturk Whitney Burton Heather Hayes Ed Kelley Haeley Franklin Marilyn Mann Jackson Bebber Alex Fair Joltdude Katherine Leon Kim Whittemore Edna Ohrbom Anonymous Heather Rowell Janine Budding L. Elizabeth Bradey Nick Dawson Grace Deal Glenda Fowler Flahrity Regina Holliday Steven Kizis Susan Kucharski Lisa Lehitnen Jim Rowell Rich Waggoner Alexandra Yperifanos AfternoonNapper Anne Karmon Scott Muirhead

$150 + Bernard Koogler, MedStartr, Paul Wicks, Marianne Vennitti, Patti Jackson, Richard & Glenda Kucharski, Anonymous, Kari Muth Ulrich $550 + The Joe Niekro Foundation Larry Chu

September - FMD Chat Together 2012 first annual retreat

Sept. 14, 2013

As of today: 8,733 website pageviews 6,924 US 236 France 212 Australia 160 United Kingdom 150 Ireland 141 Canada 138 Germany 74 Russia 36 Japan 33 Ukraine

As of today:
431 likes 229 US 41 Italy 29 France 21 Canada 15 Belgium 14 Australia 11 UK 8 New Zealand 6 Norway 5 South Africa 70 percent female, 30 percent male 41 percent of female users 35-54 155 members in closed group

Looking toward the future N.C. Center for Nonprofits 501(c)3 Tax Exemption FMD Chat Board of Directors Sarah E. Kucharski, Chairman/CEO L. Elizabeth Bradey, Vice Chairman Travis Bumgardner, Secretary Amanda Singletary, Treasurer Rich Kucharski, Member

Sarah E. Kucharski, Chairman/CEO

An intimal fibromuscular dysplasia patient, Kucharski founded FMD Chat shortly after her diagnosis with the disease at age 31. She envisioned an international network of peer-to-peer connections for patients, caregivers and healthcare providers with the aim to improve the quality of life for those affected by FMD within this lifetime. Kucharskis journalism degree from the University of North CarolinaChapel Hill, masters in liberal studies, and career in news writing, public relations and teaching has prepared her for a leadership role. She is well known within healthcare and social media circles, having spoken about FMD at Doctors 2.0 & You in Paris and HealthCamp in Washington, D.C., as well as participated in Medicine 2.0 and Medicine X at Stanford University. She regularly leads Death With Dignity

tweetchats, is engaged with advance planning, hospice and palliative medicine advocates, is a member of the Society for Participatory Medicine, and a member of Regina Hollidays Walking Gallery, which uses art to tell health advocacy stories.

L. Elizabeth Bradey, Vice Chairman

Marketing, advertising and business analysis come as second nature to Bradey, whose background includes the news, pharmaceutical and insurance industries. Bradey also brings to the table a degree in communications and masters in liberal arts with a concentration in global studies and economy from the University of North Carolina-Greensboro. She believes that success is earned through determination, ingenuity, resourcefulness and the willingness to fight. Her mission is to practice mindfulness when dealing with others, only impose direction when it will leave a positive effect, and encourage others to understand their own value through honest guidance to raise their own glass ceilings. Serving as FMD Chats Vice President is how Bradey has chosen to fight a war waged on her closest friend, FMD Chats founder. Bradeys willingness to step in and serve in the absence of the Chairman shows to her nature to not just weather each storm but help navigate through it.

Travis Bumgardner, Secretary

Originally from Georgia, Bumgardner now lives in the Smoky Mountains of North Carolina with his wife, Sarah, three cats and a dog. Following a stint at Johnson & Wales University and work in the restaurant industry, Bumgardner regrouped and graduated with a degree in Advertising and Graphic Design. He has been with Smoky Mountain News for twelve years, earning multiple awards from the N.C. Press Association for his print and web work, and for the past five years he also has been the art director of the national magazine Smoky Mountain Living, of which wife Sarah is Managing Editor. The husband of a patient with FMD, Bumgardner works to balance normal life with the unusual demands that sometimes arise given his spouse's health history. Bumgardner chose to become involved with FMD Chat as a board member to help spread awareness of FMD, support the fellow patients who have come to mean so much to his wife, and, of course, serve as inhouse designer.

Amanda Singletary, Treasurer Singletary brings to the FMD Chat board her expertise in accounting, finance and human resources. She has more than nine years of experience managing the accounting department of a print media company that produces a variety of independent and contract publications for local and national distribution. Her primary responsibilities include: payroll, accounts receivables, business taxes and human resources management. Singletary studied business administration, holds a bachelors degree in sociology, and earned masters degree in human resources from Western Carolina University. In 2010, she was inducted into the Pi Gamma Mu National Honor Society for maintaining a 4.0 GPA during her graduate studies. Singletary is a strong supporter of patient advocacy and rare disease research.

Rich Kucharski, member

Kucharski has enhanced his retirement by joining FMD Chatan organization near and dear to his heart as his daughter, Sarah, is the founder and CEO. A native of Illinois, Kucharski received his degree in economics from Bradley University, and after a brief stint as a middle school teacher, he went on to earn his law degree from Cornell University. Kucharski relocated to North Carolina for a position with the National Association of Attorneys General then moved into state government as an attorney with the Department of Correction and then as Assistant Attorney General in the Department of Justice. He spent 20 years at Western Carolina University as Chief Legal Counsel, during which time he also taught Constitutional Law and served as the Vice Chancellor of Technology Transfer. Over the years Kucharski has served on the boards of many non-profit organizations and is now vice-president of the Jackson County Community Foundation and Webster Enterprises, Inc., a medical device manufacturing industry providing jobs for individuals with disabilities or disadvantages.

Rules? Who needs rules? We do. Bylaws Purposes and activities: 1. to support individuals with fibromuscular dysplasia (FMD), a rare vascular disease, and their families; 2. to participate in the education of FMD patients, healthcare professional, policy makers, and the general public regarding FMD; 3. to partner with healthcare professionals, faculty and others to conduct or support research in FMD; and 4. to pursue such other charitable activities so as to educate and support FMD patients and their families worldwide. Also: rotating terms for board members; board members will not receive compensation for their services beyond reimbursement for expenses related to carrying out duties

Medical Advisory Board Dr. Larry Chu, Stanford University Assistant professor of anesthesia with clinical focus on eHealth, and emerging technology and medicine; appointments include admissions committee for Stanford School of Medicine, web development for American Pain Society, and editorial board for MDnetGuide. Dr. Sharonne Hayes, Mayo Clinic Associate professor of internal medicine and cardiovascular diseases and founder of Womens Heart Clinic with research interests including SCAD, FMD, and use of social media in medicine; serves on board of directors for WomenHeart and awarded Womens Day Magazines Red Dress Award for her work to improve womens heart health.

Patient Advisory Panel Three to five member group of patients Serve as volunteers to FMD Chat, advisors to BOD Appointed to two year terms May serve unlimited terms but only two consecutive terms Duties will include but are not limited to critique of FMD Chat materials for public dissemination, assisting with FMD Chat social media, and planning for future events such as FMD Chat 2013 Application information available at fmdchat.org Oct. 8 Applications due to fmdchat@gmail.com by Nov. 8 PAP selections announced Dec. 8

What does it all mean for you?

FMD Chat is growing! The BOD and PAP will work in conjunction to determine next years goals so that FMD Chat continues to provide support to patients and caregivers, educates the public and healthcare providers about FMD, and pursues avenues to improve patients quality of life in the here and now. FMD Chats 1st Anniversary - Oct. 9. 2012 World Rare Disease Day - Feb. 28, 2013 FMD Awareness Day - July 23, 2013 FMD Chat Together 2013 - Sept. 14, 2013

Other ways to get involved Interact & share: facebook.com/fmdchat, twitter.com/fmdchat Blog: tell your story to others at fmdchat.org Register with CoRDS: sanfordresearch.org/cords

Fundraise year-round: after 501c3 approval, supporters will be able to visit OneCause.com and sign up to support FMD Chat by shopping with major merchants such as DirecTV, Magazines.com, Skype, H&R Block, CafePress, Harry and David, 1-800-Pet-Meds; also support FMD Chat by buying from Jewels & Crafts of Brazil at etsy.com/people/JewelsOfBrazil; contribute on fmdchat.org

Comments, questions, suggestions?

Input is key and critique is part of the process. Thoughtful discussion always is encouraged! fmdchat@gmail.com

THANK YOU!