Rare Leader: Sharon Rose Nissley, Founder and Executive Director, Klippel-Feil Syndrome Freedom 

The Basics
Name: Sharon Rose Nissley

Title: Founder and executive director

Organization: Klippel-Feil Syndrome Freedom 

Disease focus: Klippel-Feil syndrome (KFS) is a rare, degenerative skeletal condition that affects the cervical spine. People have seven vertebrae in their necks, but people who have KFS may have any of those vertebrae, including their skull, fused together. Organs can also be affected, but the trademark of the condition is that levels of the cervical spine are fused together, along with physical differences such as short neck and low hairline. KFS can include additional bone and limb differences. Additionally, congenital defects of several organs, such as the heart, may be present. KFS is associated with other conditions as well. Much is yet to be discovered about KFS. It’s often a painful, chronic condition. Symptoms can begin in childhood, but usually start as a person reaches their mid-twenties or thirties. Diagnosis can occur at birth, or during childhood, but many people are not diagnosed until they are middle-aged adults. Every patient is a little different. The condition usually requires many surgeries and various complications throughout a lifetime.

Headquarters: Suburb of Chicago

How did you become involved in rare disease: Nine years ago, I started having a lot of pain and symptoms in my upper body. I was diagnosed with Klippel-Feil syndrome at age 38. I couldn’t find information on the Internet, or a doctor who knew what Klippel-Feil was. I was chronically dismissed. My life turned upside-down. I was having such relentless head pain that it stopped me in my tracks. I was finding little information about KFS. I struggled to find anyone else with Klippel-Feil syndrome. I was at such a loss, my career and livelihood also suffered. I grew passionate to construct something that would be a resource and support, aiming to raise awareness for KFS.

Previous career: I’m an interior designer. I work at an architectural firm in a limited capacity.

Education: B.A. in fine arts from Northern Illinois University with a focus on interior architecture.

The Organization
Organization’s mandate:  We empower and unite patients and their families through peer support, education, research, and advocacy for a lifetime of improved healthcare.

Organization’s strategy:  Our small team’s strategy is to remain focused on our vision and reach out to our patients and families to provide them with information and support. We connect with the medical community and the rare disease community at large.

Funding strategy: We are not currently a nonprofit. I have some unique challenges, as someone who is disabled, with lacking treatment options. I am not in a position to begin a nonprofit. However, this has not stopped us from reaching goals, or advancing forward for Klippel-Feil patients and families. Last year, due to KFS patient advocate and board member Emily Lemiska’s dedication, we built an in-depth KFS-specific registry through Coordination of Rare Diseases at Sanford (CoRDS) and we’re hoping to apply for grants along with our long-time project geneticist Philip Giampietro, chief, section of clinical genetics at St. Christophers Hospital for Children.

What’s changing at your organization in the next year: We have a new partnership with ThinkGenetic, which focuses on information for rare diseases. We are currently working together to build a new Klippel-Feil syndrome platform where information is available to the public—patients, parents, and the medical community. They have a medical team, and we have our small team with our geneticist. Also, we’ve been able to speak publicly to medical audiences about Klippel-Feil syndrome. I hope to have more speaking engagements in the coming year.

Management Style
Management philosophy: In my career, I am the director of my department, so I’m used to that role. In the rare disease arena, I am always learning. I try to keep everyone’s perspective in mind, work to make decisions along with our team, and try to keep in mind what is best for everyone involved while staying true to our vision.

Guiding principles for running an effective organization:  What may work for one organization may not work for another. Especially a very small organization like ours. We’ve had to embrace our uniqueness, and create change based on what we do have. Don’t allow what you see in a larger organization and wish you had to be a barrier. Use it as fuel. Remember, my skill-set is design. I did not let a so-called lack of medical or other qualifications to get in my way. Being rare makes me over-qualified, with 47 years experience. Believe it is possible, even if you don’t have all the pieces yet in your organization. Know what your vision is and keep going.

Best way to keep your organization relevant: We listen to the topics and questions people are asking in our support groups and then we take those questions and build resources on our Facebook page, so that the public can learn. We’ve built a very full system of support and in-depth resources. If we see a topic that’s current and relevant, we can respond with information on our page. That’s constant. We’ve been doing that for seven years. We’ve built a solid detailed resource, tailored to the questions that keep coming up in our community. On a larger scale we stay connected on Twitter and Instagram, because we can see the initiatives going on and stay tuned to what’s going on.

Why people like working with you: As a Klippel-Feil patient I have a first-hand perspective. I don’t have everything figured out and I’m transparent about that. I understand my peers; as an equal. As an interior designer, I work as part of a team unit. I strive to apply that same team effort at Klippel-Feil Syndrome Freedom. I’m dedicated. I’ve stuck with this for years. It’s a passion that doesn’t die within me. I have a positive outlook for the lives of people with Klippel-Feil.

Mentor: Specific to Klippel-Feil, my geneticist, Philip Giampietro. He’s been with me all along. He’s just a wealth of information. He’s so humble and willing to help us. He stands with us through thick and thin. He’s become a friend and he’s always there to support our efforts. He’s never above it. Stephanie Fischer [communications consultant to Global Genes] has helped me so much with understanding the rare disease arena. She’s a wonderful leader. She’s helped me through the years.

On the Job
What inspires you: When a patient, family, or parent looks KFS in the eye and says, “Oh no, Klippel-Feil, not today.” It’s the stories of their everyday perseverance.

What makes you hopeful: We’re unconventional. We’re doing things a little differently. I find hope in the successes that we’ve had, and I know there are more to come. Every time we have a little win, I know we are going to be able to get there even if we can’t do it like the next guy.

Best organization decision: Because I do the day-to-day work, it’s setting boundaries. As a patient, I was not taking care of myself because I was so determined to get Klippel-Feil out there. I became overly stressed and depleted. I wanted to stop, but I realized this passion isn’t ending. It has helped me to care for myself first, and limit my time “on call.” Now, I can be more effective for Klippel-Feil patients and families at limited times, and being careful about what we add to our plate.

Hardest lesson learned: Navigating and administrating a rare disease community online is very different the face-to-face interaction that I’m accustomed to as a professional. It requires a different skill-set and I’m still learning that every day.

Toughest organization decision:  Setting limits for what we can take on means that we can’t meet everyone’s needs. I used to think I can help everyone. We have requests from all over the world, in different languages. We can’t help everyone at every moment. The limits are tough to accept, but it’s realistic and necessary if we are going for the long haul.

Biggest missed opportunity: I’ve been fortunate to be invited to a lot of rare disease events and galas over the last seven years. They require travel and expenses and I’ve had to pass a lot of them up both because of financial and physical issues. Those opportunities would make such a positive impact for me as a rare patient advocate and for Klippel-Feil Freedom. There’s no shame in not going, but it is something we’ve missed out on.

Like best about the job: Interacting with people and helping others, or offering suggestions, is a no-brainer. Also, as a right brainer, I’ve been designing graphic images to express the facts about Klippel-Feil, about our needs, and our care. It’s cathartic for me to create a way that I can interact online about rare disease, through visual expression.

Like least about the job: Not being able to help everyone and meet everyone’s needs, not having answers. Also, misunderstandings that arise simply because we are online—texting or emails—not always speaking directly.

Pet peeve: If your desk is too neat and organized, you are not that busy. That’s a problem for me.

First choice for a new career: I love interior design, but I also love graphic design and floral design.

Personal Taste
Most influential book:  The Nightingale, by Kristin Hannah

Favorite movie: Lady Bird

Favorite music: I like all kinds of music. My mom had a huge record collection and growing up we listened to records of all kinds every single day growing up. I’m eclectic.

Favorite food: A good cheeseburger

Guilty pleasure: Any kind of candy

Favorite way to spend free time: Laughing with a good friend, hanging out with my beagle, gardening, and binging a great tv series.

November 29, 2018