Editor's Column - Introducing Chitra and Hannah
Sandy Siegel

We are thrilled to introduce you to the first employees of The Transverse Myelitis Association.  After 18 years of being an entirely volunteer organization, the TMA is professionalizing to ensure that our critically important work will grow, develop and continue into the future. 

I am delighted to announce that Chitra Krishnan has assumed the position of Executive Director of The Transverse Myelitis Association.  The officers of the Association have been planning for this change for a long time.  We've all clearly understood that having an entirely volunteer organization was not sustainable.  It was also abundantly clear that we need to grow and develop our Association.  It is imperative that we attract more clinicians and scientists into our discipline.  We need to be able to fund more research and we need to be more involved in influencing the directions and priorities for research.  Our Association is not doing enough collaborating with other organizations to take advantage of the opportunities that exist by virtue of shared efforts and resources.  We need to improve and expand our education and our awareness programs.  Taking our organization to the next level required us to professionalize; to bring on board the people who could make all of this critically important work happen for our community.

In our discussions about the person who would take on this position, there was unanimous agreement that the person needed to be exactly like Chitra.  The person needed to have her intellect, her drive, her curiosity, her organizational skills, her creativity, her passion, her knowledge of the biology, medicine and research, her personal and professional skills, and her huge heart.  Thus, to conclude this process by actually having the person who needed to be exactly like Chitra, turn out to be Chitra, is way beyond our wildest expectations.  What we anticipated was that we would hire someone and then spend months training this person and try our best to encourage the development of a passion for the cause.  Having Chitra means that instead of spending all of this time and effort, and assuming the risk that we could create another Chitra, we just got Chitra.  If you know Chitra, and many of you do, you will understand how blessed we are to have her take on this responsibility.     

Our organization has always been a matter of the heart; my drive and determination comes from my love for Pauline.  And thus, from the heart, I need to recognize a very special person and a very close friend who made all of this possible.  Geoff Treglown had transverse myelitis.  He later developed Parkinson's disease.  Geoff found me and the TMA shortly after there was an internet.  We began communicating regularly.  Geoff was retired; he had been a science teacher at a prestigious boarding school for 37 years. 

Geoff volunteered to take over the mailings of our new member packets and all of our publications to our membership in the UK.  As our membership grew in Europe, Geoff took over responsibility for those mailings as well.  In those early years, the TMA had little money to cover the costs of printing and postage.  Pauline and I were paying for much of this cost out of our savings.  Geoff found Lew Grey who was able to help Geoff with the printing of the materials.  Geoff and Lew took over the entire printing and mailing operation.  I know that they paid for the materials and the postage out of pocket and they never asked for recognition. 

Over time, Geoff became the support group leader for all of the UK and Europe.  When people were seeking information and support after receiving a TM diagnosis, they called or emailed Geoff.  He offered guidance and wisdom and support to so many people.  He was such a good man.  Geoff was the consummate British gentleman, and he was a kind, caring and loyal friend.

Geoff had experienced a fall and was in and out of hospitals for months.  It was such a difficult and frustrating time for him.  Geoff was unable to receive phone calls from outside of the country, so we communicated with Geoff through letters and post cards.  Then one morning, I received a phone call from Margaret, our support group leader in Scotland, and she gave me the very sad news about Geoff's passing.  I was heartbroken.  I think of Geoff all the time and I miss him deeply.  All of Geoff's friends miss him. 

Shortly after Geoff passed away, I was contacted by an attorney who was settling Geoff's estate.  He told me that The Transverse Myelitis Association would be receiving a check for $300,000.  Geoff's gift was, by far, the largest donation that the Association had ever received.  I immediately decided that there would be no greater legacy for Geoff than to use his gift to ensure that the Association, his Association, would continue to exist well beyond the core group of volunteers that shared his passion for this work and our cause.  Thus, I went to the board with this proposal and everyone agreed that we should deposit all of the money and allow it to earn interest until we were in the right place to professionalize the organization.

You are changing the world, Geoff.  When I think about all of the wonderful accomplishments that Chitra makes for our organization and for our community, I will always think about you.  I will remember how grateful I am for your generosity and how blessed I was to have your friendship.

I never had the opportunity to meet Geoff in person.  I'm pretty sure I would have given him a big hug, and I'm fairly certain it would have made him moderately uncomfortable.  It is so fitting that Chitra had the opportunity to meet Geoff!  Ann Moran, our support group leader in Ireland, held a support group meeting and Dr. Kerr and Chitra attended and made a presentation to our members.  Geoff was able to attend this meeting.  I saw Dr. Kerr and Chitra just before they left for Ireland and I told them about Geoff and what an enormous contribution Geoff was making for our community.  And, of course, Chitra was able to meet and spend time with Geoff, because this is how life works.  Karma. 

Chitra received her Bachelor of Science in Life Sciences and Biochemistry at St. Xavier's College, University of Mumbai, India in 1997. She obtained her Master's in Health Sciences (MHS) from the Johns Hopkins School of Hygiene and Public Health in 2001.  She started her journey with the TMA when she was the Research Program Coordinator at the Johns Hopkins Transverse Myelitis Center (JHMTC) and was most recently the Executive Director of The Johns Hopkins Project RESTORE. Chitra coordinated all basic and clinical science research activities at the JHTMC. She has been trained in the diagnosis and treatment of patients with TM, epidemiology, biostatistics and design and implementation of research studies and clinical trials. While a student at the School of Public Health, she developed a comprehensive health questionnaire and evaluation strategy for following patients with TM. She then created a database for this information and managed that database at the JHTMC. This allowed her to assist with management of TM patients throughout the world as they were diagnosed. As Johns Hopkins had the only TM Center in the world, Chitra developed a very specialized expertise in TM and recurrent TM. Besides the physicians on our medical advisory board, no one has seen more cases of TM, worked with more patients, or performed more research on TM than Chitra. Chitra is extensively published in the area of the neuroimmunologic disorders, and particularly Transverse Myelitis and Recurrent Transverse Myelitis.

While at the JHTMC Chitra served as the vital link between The Transverse Myelitis Association and the TM Center. In addition to her important role in supporting clinical care and research, Chitra also assisted the TMA in educating the community about their conditions, symptom management practices, and novel treatment strategies. Chitra was responsible for planning and organizing the TMA and JHTMC symposia.  From the time of her arrival at Johns Hopkins, Chitra has been intimately involved in the development and planning of our Association's goals and programs.  Chitra was the only member of our medical advisory board who was not a physician. 

Chitra received the first TMA Distinguished Service Award in 2004.  The best way for me to describe Chitra's contributions to our community is to quote from the speech I gave about Chitra when presenting her with this award:

You can pay a person to learn; you can pay a person to perform research and to write reports and apply for grants. You can pay a person to facilitate communications with patients and between physicians. There is no amount of money you can pay a person to make them care. The qualities that Chitra brings to her position have a value that cannot be measured in dollars and cents. Her commitment to the TM community goes well beyond the responsibilities defined by her job. Her impact and her service to our community are truly extraordinary. I know that when Chitra came to the Johns Hopkins TM Center, she was thinking she was taking employment at a job. That idea has long since disappeared. Chitra's work is about her ideals, her values and her heart. Chitra isn't about making a living. Chitra has joined the crusade. I can see it in her eyes when we are talking about a sick child, or an adult who is suffering with severe depression or with horrible pain. I hear it in her voice when we are sharing our disappointments about not being awarded a grant for a study.  Her enthusiasm for her work is about the people. She loves the people in our community. It would be difficult to find a person as bright and creative as Chitra. It would be difficult to find another person who is as highly motivated. It would be a challenge to find another person who is as organized and as good a communicator. But it would be absolutely impossible to find another person who brings the heart and spirit that Chitra brings to her work.

Currently, she is the Director of Knowledge and Learning at Ashoka Changemakers.  Ashoka is a citizen sector organization that strives to shape a global, entrepreneurial, competitive citizen sector: one that allows social entrepreneurs to thrive and enables the world's citizens to think and act as changemakers. To ensure that the leading ideas for social change are fully developed and sustained, Ashoka identifies and invests in leading social entrepreneurs and help them achieve maximum social impact. In her current role at Ashoka, Chitra is uniquely positioned to share and leverage innovative solutions that change the landscape of how rare diseases are studied and treated globally by bringing visibility to innovative collaborative research efforts and embracing a systemic approach to understanding the diseases and finding new therapies.  She is also an adjunct Research Associate at Johns Hopkins University Department of Neurology and the Vice Chair of The Johns Hopkins Project RESTORE Board of Ambassadors.

I am also thrilled to introduce our community to Hannah Harter, the TMA's Operations Manager.  Hannah will be involved in running the day-to-day operations of the organization, ranging from project management to administration and human capital.  Hannah will be working closely with me and Chitra to chart our future growth and strategic response to an ever-increasing demand for the organization's services.  She will be working closely with our community, academic partners and the Board to develop and maintain the sense of community in our organization – among officers, board of directors, medical advisory board, support group leaders and members.  Working with the management team, she will also contribute to the development and implementation of organizational strategies, policies and practices. 

In High school, Hannah started participating in international volunteer work and fell in love with traveling and became passionate about helping the world around her.  She spent her summers in Juarez, Mexico building houses for impoverished families living in the barrios and in Minsk, Belarus putting on summer camps for Belarussian youth.

After graduating high school, Hannah decided to postpone starting college to take a year off to do volunteer work in Kenya.  She lived in East Africa's largest slum for nine months working in an HIV/AIDS clinic, where she worked in the pharmacy distributing anti-viral medication to patients.  While there, she also coached a girls' soccer team and taught English at a community center for Ethiopian and Somali refugees.  Her time in Kenya inspired Hannah to return to the US, attend college, and pursue an education in international development. 

Hannah graduated from the University of Colorado in 2009 with a degree in Anthropology and a minor in Economics.  Shortly after graduating, she was hired by an international capital finance company in Washington, DC.  After working as the Office Manager for eight months she was given the opportunity to head a project in Kuwait City, Kuwait.  With one month's notice, Hannah moved to Kuwait and managed an internationally-certified, six-month training program for Kuwaitis working in the aviation field.  As the only staff in Kuwait, Hannah was in charge of all the aspects of the training program, including marketing, registration of students, arranging course material, daily scheduling, attendance, and coordinating with the international course instructors.

Upon the successful completion of her project at the end of 2010, Hannah returned to DC and began a new job at a start-up tech company, The HealthCentral Network (HealthCentral.com), where she worked as a Project Manager handling advertising and sponsorship programs.  The mission of HealthCentral is to empower people with the knowledge and support they need to make informed decisions, with their doctor, about care in order to improve and take control of their health and well-being.  Hannah was excited to be back in the healthcare field and was passionate about the mission of the company.  At the end of 2011, HealthCentral was acquired by a larger media company, leaving many of its employees, Hannah included, without jobs.  While nervous about the economic uncertainty, Hannah was genuinely excited to have the opportunity to re-evaluate her professional goals and was determined to find a job that aligned with her desire to help people and make a difference in the world.  Her philosophy is: if she has to work, she might as well make a living helping the world around her.

During this time, HealthCentral's CEO introduced Hannah to Chitra Krishnan.  Four days after their initial conversation, Chitra contacted Hannah, told her about the TMA and presented her with the opportunity to get involved.  It all seemed to fit perfectly.  Hannah began working for the TMA in February, 2012. 

In a very short time, The Transverse Myelitis has assembled a top rate team to carry us forward as a professional organization and to develop our organization into a leading advocacy group for our community.  Our hope and our goal is to become a model for health advocacy organizations with our approach to support, education, and research. 

Chitra and Hannah's acceptance of these positions is going to have a transformational impact on our organization and our community.  What will not change is my involvement or Jim's or Debbie's work for the community.  This process is not about our going into hibernation, it is about ensuring that the organization will survive and grow and flourish beyond the lives of a few volunteers.  The benefits from this process for all of us will be substantial.    

Achieving these benefits is going to require that our community take on more responsibility for our organization.  Jim, Debbie, and I have always talked about raising money for education, research, and support.  We have not raised the kind of money that would allow our organization to advance and grow.  While we lacked resources, our organization's existence was never in jeopardy.  We weren't paying salaries or benefits and we had no overhead costs.  If we didn't raise enough money to support research, we just didn't.  If we didn't raise enough money to have a workshop, we didn't.  But the organization continued to exist.  That dynamic is no longer going to work for this organization.

Our current membership more than 8,800 people and these people come from more than 80 countries around the world.  We have no membership fees and we don't charge for any of our publications.  Our contributions in 2010 came from just 495 people; we were supported by less than five percent of our members.  We are really grateful to those 495 people for their generosity.  But our organization will not survive if we can't make the case to 8,800 people that they are going to need to get involved in supporting our effort.  There are few organizations that survive with so little support.  There are fewer organizations that can survive with just volunteer workers.  Every organization eventually has to professionalize in order to survive.  And just surviving is not going to be nearly enough for what we need to accomplish.  We aren't going to get a Jerry Lewis.  We can't wait for a Michael J. Fox.  Whether you are financially able to help or not, you are going to have to get involved in helping to support our community.  What we can't do as individuals, we have to be willing to make the case to our family and friends and ask them to help to make a difference.  And the request cannot come just once … you have to be willing to make the case to them regularly. 

We are blessed to have Chitra and Hannah.  Their willingness to take on these critically important leadership positions is going to change everything about our organization for the positive.  If you are looking for a reason to hope, Chitra taking the Executive Director position and Hannah taking on the role as Operations Manager is a wonderful basis for that hope.  Their success is going to depend in very large part on our willingness and enthusiasm to support their work.  I am hoping and counting on our community to get behind this effort so that Chitra and Hannah are able to effect the changes that will ultimately improve the quality of lives for the children and adults in our community who have been impacted by these horrible disorders.