Name: Kelly Ranallo
Title: Founder and President
Organization: Turner Syndrome Global Alliance
Disease focus: Turner syndrome is a spontaneous chromosomal disorder caused by a partially or completely missing X chromosome. The condition affects only females and is estimated to occur in 1/2500 live births. Girls and women with the condition typically have short stature and experience premature ovarian insufficiency leading to infertility. Other symptoms can include cardiac defects and kidney malformations, skeletal and lymphatic changes, hearing and vision impairments, as well as non-verbal learning difficulties.
Headquarters: Overland Park, Kansas
How did you become involved in rare disease: My oldest daughter was diagnosed with Turner syndrome in 2006 when she was eight-and-a-half.
Previous career: I was trained as a physical therapist and owned a medical staffing company.
Education: B.S. in physical therapy from Rockhurst University
The Organization: Turner Syndrome Global Alliance also known as TSGA
Organization’s mandate: Our mandate is to connect science, resources, and funding to the Turner Syndrome Community.
Organization’s strategy: TSGA was founded in 2014 by parents of girls with Turner syndrome in response to the lack of a coordinated effort to promote research on TS. Girls and women with TS deserve to have access to good information to help make informed decisions about their health, and we want to make a significant impact on research that will benefit those who live with TS today.
When my daughter was diagnosed with Turner syndrome, it was hard to find providers who understood her rare disease. To resolve this, TSGA created a clinic model that develops comprehensive care centers for Turner syndrome. The positive response from the patient community to a model of care that allows patients to see multiple providers in a clinic setting resulted in the TSGA KidNECT model of care. KidNECT includes four key components of a successful clinic program: Networking, Education, Comprehensive Coordinated Care, and Transitions.
To promote research, TSGA is working with 10 key Clinic Directors to develop shared templates for a REDCap database to collect patient data, including data uploaded from EPIC. By partnering with clinics on this project, TSGA anticipates that there will be a large enough pool of data to interest researchers within one year. There are currently 31 self-designated TS Clinics across the country that could potentially collaborate in this research.
TSGA is a founding member of the Turner Resource Network, a collaborative group that also includes Turner Syndrome Society, medical professionals, and researchers. The Turner Resource Network is hosting a Turner Syndrome Science Symposium in July that aims to bring Turner syndrome to a larger research platform. TSGA has been awarded a Patient-Centered Outcomes Research Institute (PCORI) contract to help fund this meeting.
Funding strategy: It is challenging to fund research for Turner syndrome and other rare diseases because the passion is primarily driven by the patient/family population and, often, families use all their resources to provide for the care of their child. TSGA is fortunate to have strong support from the Kansas City TS community, which fundraises for with an event every year. In the past, Turner syndrome advocacy organizations had strong support from our industry partners who develop and market growth hormone, a medication used for Turner syndrome. However, the resources and support of the pharmaceutical companies has declines as less expensive generic medication has become available. TSGA recently applied for a PCORI Engagement Award to support the upcoming TS Science Symposium, and we are thrilled to have been awarded a contract. To fund our big research initiatives, we hope to build relationships and be able to collaborate with PCORI and other funders within the National Institute for Health.
What’s changing at your organization in the next year: For the past four years, our primary focus has been on supporting the development of pediatric clinics and encouraging local advocates to play a support role in clinics. In 2018, we are now using our relationships with Clinics to move forward in developing the necessary infrastructure needed to create multi-institutional research opportunities.
Management philosophy: My personal management style is to empower and inspire. Most young non-profits, including our own, are primarily powered by passionate volunteers. Manpower is our most limited resource and therefore our success is dependent on bringing our vision to others who can then add their energy and commitment to our work. We also build strong collaborations with experts in the field and inspire them and support their commitment to help us elevate resources and research that will benefit girls, women and families living with TS.
Guiding principles for running an effective organization: We work hard to stay focused and nimble. Often, we see non-profits spend a significant amount of time with internal struggles, turnover, and multiple layers of bureaucracy. We believe that TSGA’s success has come from maintaining an entrepreneurial mindset, solid networking and a strong commitment from our volunteers and founders.
Best way to keep your organization relevant: We spend a lot of time listening to and engaging our patient community to understand the needs. We collaborate with other national organizations such as Global Genes to better understand the larger healthcare environment and what might be impacting the future of rare disease as a whole.
Why people like working for you: Others enjoy working for us because we are inspiring, we’re good at building collaborations, and we develop programs that are sustainable and significantly impact the lives of girls and women with Turner syndrome. We have been able to create a bigger vision and more hopeful future for our families.
Mentor: Nicole Boice (CEO of Global Genes) has been a mentor to me in the rare not-for-profit world. She inspires me through her persistent energy and ability to make the right connections at the right time. My father as he taught me to take chances and “own” it no matter what the outcome becomes. And finally, a dear friend and old colleague of mine, Paul Caldwell. He taught me a lesson early on that I have taken to heart: if you want to get there faster, do it yourself, but if you want to get there farther, bring others along with you. I have a tendency to want to get there fast, but I realize there is only one of me. If TSGA is going to create a world where girls and women have access to health care that is driven by research and results in healthier, higher qualities of life, then building collaborations is important.
On the Job
What inspires you: First and foremost, I am inspired by my daughter Allie who has faced each challenge of Turner syndrome with courage and grace. I am also inspired by the hundreds of other girls and women like Allie that I have met on this rare disease journey. Finally, I am inspired by the knowledge that TSGA is changing healthcare for patients with TS and making this journey easier for all those whose lives have been touched by Turner syndrome.
What makes you hopeful: The progress we have already made and our success in building a network of clinics by engaging the power patient advocacy has when we are a valued stakeholder in healthcare. In addition, watching the energy continue to grow both locally and nationally for rare disease research and drug development.
Best organization decision: Stay focused on our mission and don’t duplicate work that is being done by others.
Hardest lesson learned: Fully understanding and appreciating the difficulty of raising enough funds to build a sustainable organization.
Toughest organization decision: Realizing that we couldn’t do it all. It took us some time to narrow our focus and find our lane in the world of TS advocacy. We learned that our ability to be successful and maintain the energy the commitment the work requires is dependent on our ability to have a strong focus and build strong collaborations with others who share our vision.
Biggest missed opportunity: I wish we would have engaged earlier in educating ourselves on various grant programs through the NIH, PCORI, March of Dimes and other national organizations. The pathway to understanding these grant processes is overwhelming and extremely time consuming for young nonprofits.
Like best about the job: I like being able to make possible what most people deem as impossible. We get told “you’ll never be able to make that happen” a lot. I think what I like best is knowing that we have such an amazing TS community that is deserving of so much more.
Like least about the job: What frustrates me is how often the work of non-profits is undervalued. It’s so much easier to raise funds and build a sustainable business in the for-profit world that it is for nonprofits.
Pet peeve: When organizations can’t work together. The negativity and competitiveness that often exists between similar organizations drives me crazy. It seems to be a significant waste of time and resources that at the end of the day undermines the goals of helping patients and families.
First choice for a new career: It already came true. I was recently hired by a leading rare disease biotech company. I am a clinical account associate. It allows me to fully understand how industry can work and utilize its resources to be a valued partner in transforming the future of rare disease.
Most influential book: Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson by Mitch Albom. I found it relevant to life and what life brings you.
Favorite movie: My Cousin Vinny – it’s a family favorite that will engage my boys no matter how many times we’ve watched it together
Favorite music: All kinds of country music. My favorite artist is probably Garth Brooks. His love and passion for music has impacted millions of people over the years and inspired many young artists that have come behind him.
Favorite food: Italian. My husband is Italian and he’s an amazing cook. Not only is it good food, but it comes with family centeredness and togetherness in a big Italian way.
Guilty pleasure: Cotton candy.
Favorite way to spend free time: Our lake house. It’s a great place to get away with my family and disconnect from the rest of the world.
May 10, 2018