Rare Leader: Kristin Archibald, Founder, NKH Crusaders

The Basics
Name: Kristin Archibald

Title: Founder

Organization: NKH Crusaders

Social Media Links:

Previous Career: I am working full time for IQVIA as a Project Management Analyst. It is a wonderful company that is very supportive of my commitment to NKH Crusaders. Prior to working for IQVIA I was a resource coordinator for Partners in Health and a volunteer patient advocate.

Education: Certified patient advocate, Cleveland State University

Disease Focus: NonKetotic Hyperglycinemia or NKH for short. NKH, also known as glycine encephalopathy, is a rare, genetic, metabolic disease. There are only about 500 known cases worldwide. Children with NKH are unable to breakdown the amino acid glycine. Toxic levels of glycine disrupt the normal function of the brain. Symptoms include and are not limited to, seizures, lethargy, cognitive abilities, feeding difficulties, low muscle tone, behavioral issues, gastrointestinal problems, and early mortality. There is no cure and limited medications to treat the condition. It is a very complex disease, and our focus is on finding a cure and finding medications that can make a difference. We are focusing on gene therapy and chaperone therapy.

Headquarters: Weymouth, Massachusetts

Organization’s Mission: Providing support for newly diagnosed families while raising awareness and funds for NKH research.

Organization’s strategy: Our first strategy is to make sure we are looking at where we are now and what we need to do to accomplish our goals. For many years, NKH families were hosting their own fundraiser and sending money to the universities that were leading NKH research. The families did not really know what their funding was supporting. In 2019, I created the NKH Leadership Committee that brought all the U.S. NKH families who were actively involved in fundraising together for monthly meetings. The leadership committee is committed to funding research, bringing awareness, and supporting families. The committee established transparency with one another and required transparency from the researchers not just to us but to the donors who are supporting the research. When we started this committee, it was a group of six. We now have 15 families who are active not only in attending the meetings, but also in raising funds for research.

Funding Strategy: NKH Crusaders holds many small events through out the year from T-shirt sales to raffles and bake sales. We hold a large dinner and silent auction yearly. This event usually raises $20,000 to $30,000 from ticket sales, sponsors, raffles, and straight donations. To date, NKH Crusaders has donated over $500,000 to NKH Research. We have many other NKH families who are active in their communities and who are also raising money every year for research. During COVID we had to get creative and did a raffle card, Zoom the Room Virtual Walk, and letter writing campaign. We hold a Facebook fundraiser and have an online Facebook NKH Raffles for Research page. We are truly families funding research.

What is changing at your organization in the next year: This year we are excited to return to an in person conference and fundraising event in October after having to cancel the last two years due to COVID. We are also in the early stages of building an NKH Patient Registry.

Management Style: The board at NKH Crusaders has been working together since 2010 when we were formed. We are a small but committed group. We all bring unique and strong skills to the table. We meet bimonthly unless we have an event coming up, then we meet sometimes as frequently as weekly. These ladies have been there since day one when we had to raise $10,000 to even be able to establish a fund at the University dedicated to NKH research. They are a constant source of encouragement and friendship. Since we formed the NKH leadership committee, it has allowed us all to have a voice. We work as a team to fund the researchers and make decisions.

Management Philosophy: NKH Crusaders’ management style was always designed to build an environment of integrity and to establish trust within the NKH community, researchers, and the NKH leadership board. It is to empower the members of our organization and families to be leaders in their own communities. We do this by leading with empathy, compassion, and love.

Guiding principles for running an effective organization: Communication and transparency is important. In these early stages of research, it is the families who are providing the money to the researchers. They are the ones in the communities, not only raising the funds, but raising awareness. By keeping the lines of communication open and families informed it helps them feel more connected, and in the end, we hope more involved.

Best way to keep your organization relevant: Listen to others—what the needs in the community are, what the concerns are, and what they are not getting. It is also important to keep in communication with the researchers to know what is happening and what their goals and timeline are. This allows us to not only keep NKH families updated but our donors as well. We want them to know their money is making a difference and things are moving forward.

Why people like working with you: This one is hard for me to answer, but I did ask a few members of the board to give honest feedback and what they had to say was that I communicate well and lead by example. When I say I am going to do something, I do it, and to them, that defines integrity. I have been told I am compassionate, honest, patient, and easy to talk to, and that my passion for helping others and my son makes others want to be involved.

Mentor: I have had so many people in my life and especially on this journey who have mentored me. My parents gave me a strong foundation and led by example on how to navigate tough times. To name a few others in my life who have inspired me to keep reaching, I would say Leah Hect, a nurse practitioner from Boston Children’s; Gary Blume, the minister from our church; and Johan Van Hove, who is one of the leading NKH experts in the world. The other members of the leadership committee too. We learn so much from one another. There are so many others to whom I owe so much for their constant support and encouragement, most especially those who have been part of NKH Crusaders since the beginning.

On the job
What inspires you: People have often asked me, why did I get involved. My first answer was obvious— my son. When my son was diagnosed, I was overwhelmed and afraid. Being told there was no cure, no hope, and then finding out there was no research being done. I struggled to understand how and why. I felt helpless in those early days. I woke up every day and looked at my son and I never wanted to have regrets and say I didn’t try harder or do enough to help save him. I did not know if even saving him was possible. Over time, as I met other families, heard their stories, became connected to the NKH community, it no longer was just about helping Thomas. It was about helping them all. These families became my family—their strength and perseverance when they were told there was no hope and yet they never gave up. They too became my inspiration.

What makes you hopeful: I do have hope. I won’t say it is easy. We have lost so many children to this disease since my son was diagnosed. We all live with this fear in the back of our minds every day that it could be our child. At times that drives me to work harder, and at times it can paralyze me. I have hope that one day in the not-so-distant future we will have a cure or at the very least better treatment options that don’t just treat some of the symptoms but stop the disease from progressing. Science has come so far since we started. Gene therapy is being used and looked at for so many things. As science advances, it allows our researchers to do more. We have a truly incredible team of doctors working on NKH research at this point. We have Johan Van Hove from the University of Colorado, Kasturi Haldar from the University of Notre Dame, and Nick Greene, who is doing amazing research in the UK. These doctors not only lead the research they lead our families, our organizations.

Best Organization Decision: NKH Crusaders has made some great decisions over the years. The most recent one was forming the leadership committee. It has changed so much within the NKH Community. It has united us in ways I never dreamed possible and honestly prepared us for what we hope will be clinical trials in the future.

Hardest Lesson learned: This is a difficult question for me, way back in the early days of NKH Crusaders not everyone believed in what we were doing, many told me to stop giving false hope—that there could never be a cure. There were times when I questioned if I was on the right path, but I had to look my son in the eyes every day, and I truly believed in my heart that I could do more. I had to learn that not everyone will believe what I believe, we all come to the table with different life experiences, and this disease is different for each one of our children. I also had to learn that I can not do it all and it’s okay to have to set limits.

Toughest Organization decision: NKH Crusaders had to decide early on that all our funding was going to go towards research and not helping families financially. This was a tough one as so many families struggle financially when dealing with a rare disease. Often one parent has to stay home, and their income drastically decreases, and their expenses drastically increase. Many families would reach out looking for financial help and it was so hard to say no. I am grateful today that we have several other NKH organizations—like The John Thomas Foundation and The Lucas John Foundation—that can help families with certain medical expenses or medical equipment.

Biggest Missed Opportunity: I do not think we have missed many opportunities; we have twice made it to the final selection process for the Chan Zuckerberg Initiative’s Rare as One grant and I am hoping if given the opportunity the third time will be charm. It is a fact that at this point in NKH research if we had more money, we could move research ahead faster.

Like best about the job: This is all-volunteer work, and I have met the most amazing families who inspire me every day. I have learned so much about myself and my family on this journey. I have created friendships and built relationships with so many. Everyone has a story. We can learn so much if we take the time to stop and just listen. I love connecting with the families.

Like Least about job: I wear my heart on my sleeve. When you meet a new family and help them through those early days you become so attached to their success and you mourn their losses and setbacks. We have lost too many children to this disease, and my heart breaks when I watch a friend go through losing their child. No parent should have to watch their child suffer; no parent should ever feel that their child’s disease is not important enough to fund research for.

Pet Peeve: Negativity—this road of rare disease is hard enough and I do try to find the positive when I can in every situation.

First Choice for a New Career: I love what I am doing. If given a chance for a new career, I would say music therapist.

Personal Taste
Most influential Book: I love to read. I read every night. It is how I unwind. One book that stands out to me is The Shack by William Young. I read it years ago at a time when my son was so sick. I was struggling with my faith and wondering why this had to happen. I was invited to a book club, and this was the book we read. It was powerful and the discussions that happened in that book club were powerful. It helped me find a way to turn to my faith and not away.

Favorite Movie: I love The Sound of Music, and The Blind Side. I never get tired of watching them.

Favorite Music: I love to sing and play the piano, so I love all music, but I am a huge Country Fan. I love Luke Bryan.

Favorite Food: My mother’s coconut cake

Guilty Pleasure: I love to watch reality TV.

Favorite way to spend free time: It is always with my family. I am married 27 years to my husband Bill and the mom to three amazing sons: Paul, Ryan, and Thomas. I am happiest when I’m with them and my extended family. I could not do what I do for other NKH families without their love and support.