Rare Leader: Deborah Fowler, President and Founder of Soft Bones

The Basics
Name: Deborah Fowler

Title: President and Founder

Organization:  Soft Bones

Disease focus:  Hypophosphatasia, or HPP, a metabolic bone condition that most often affects the development of bones and teeth. The signs and symptoms vary widely, with mild cases causing only dental abnormalities while the more severe types have life-threatening consequences. The hallmark of the disorder is bones that become soft or weakened, causing skeletal deformities, fractures, premature tooth loss and pain.

Headquarters: Boonton, New Jersey

How did you become involved in rare disease: I was a journalist and always very resourceful and looking for information that was validated and accurate. My son was diagnosed with hypophosphatasia when he was 18 months old. I had never heard of it before. When my doctor told me what he had, I Googled it and basically there was a Wikipedia entry that had some very cryptic language about prognosis and what the expectations would be for survival, especially for someone in the infantile-toddler years. I asked, “Where’s the advocacy group for this condition?”  and quickly found there wasn’t one. I started to look online for other people and connected with a listserve on Yahoo! and started to communicate with patients. I became very frustrated because every time someone who was new would come into our chat, they would ask the same questions and we would have the same conversations over and over. I figured there has to be a better way to get information. Nothing was medically validated that was being circulated. I just had it in me to start this on my own to try to prevent people from going through the same thing that I went through and feeling frustrated with the lack of resources and support.

Previous career: Broadcast journalist and healthcare public relations  

Education: BA in English (minor in biology), Hobart and William Smith Colleges

The Organization
Organization’s mandate: The mandate is to provide information and support of people living with hypophosphatasia. We cast our net pretty widely because we also support research and do a lot of policy work. A lot of advocacy groups will hang their hat on one area like research, or patient support, or policy. It’s hard to find a lot of people to do all of those things, so we have taken it on ourselves to have activity in all of those areas.

Organization’s strategy: Supporting the patients and giving them what they need. Making sure research is happening—that’s such a big priority for us because we want to make sure that hypophosphatasia, because there is an approved therapy, doesn’t fall off the radar of researchers. We continue to drive and attract new researchers. And the policy initiatives.

Funding strategy: We have a diversified strategy. We’ve had to diversify our fundraising initiatives to make sure we were not totally dependent on any one particular area because fundraising efforts in rare disease is so challenging. We try to get out there in different ways – Giving Tuesday and awareness day appeals, sponsorships, and individual donations.

What’s changing at your organization in the next year: This has been a pivotal year for us. We are transforming to become less of a virtual organization, even though we have an office. We are looking to become more present in local communities. We have regionalized the organization to become more grassroots. We’re establishing eight regions and they will have their own meetings and fundraisers to allow us to focus more on the strategy and the future of the organizations.

Management Style
Management philosophy: The management approach is rooted in strategy, but it’s about prioritization. We have a very nimble style. One of the things we realized was because of change in the industry, especially in the rare disease space, having that nimble style allows us to pivot and capitalize on the changing landscape.

Guiding principles for running an effective organization: Being comfortable with change. Leading through change. Building trust through transparency. Focusing on execution and problem solving. One of the things we do well is that when we make a decision to do something, we do it and activate on it. And then if there are inevitable troubles along the way, we go into solutions mode.

Best way to keep your organization relevant: Listening. Listening is huge. Listening to the patients. Listening to what’s happening in the changing healthcare landscape. And then staying connected to the influencers and researchers. That will allow you to shape your strategy in a way that’s meaningful and relevant. The other part is keeping yourself as a valuable resource. Knowing what the value is that you can bring as a patient organization to inform trends and connect the dots.

Why people like working for you: People like working for me because I’m not a micromanager. I hire people who are capable, and I trust them to do the job. I think they like the freedom they have to go out and do the work, and not have someone breathing down their neck. They know I’m approachable if they have a challenge and they want to work through something. They know that I’m there for them if they need me.

Mentor: My father. My dad has always encouraged me to go for my dreams. When my son was diagnosed, I couldn’t put my head on the pillow at night and hope that somebody was there doing research. I wanted to make sure someone was doing research, and make sure somebody was caring and trying to help these patients. He was really supportive.  He got together his friends and had a big golf outing. That continues to be our biggest fundraiser and it ignited this group.

On the Job
What inspires you: My son and the patients.

What makes you hopeful: I think there’s a lot of promising research happening right now with Crispr and some of the gene therapies and stem cell therapies that are out there. I have a vision of my son having a very normal life. That’s what drives me.

Best organization decision: One of the best organization decisions we’ve made is to focus on research and to have a grant. Even though it’s not a big grant, it’s allowed us to connect to researchers and opened up the door for people to reach out to us to say, “Hey, I’m interested in doing research on this.”  A lot of time it’s younger researchers and we bring them into the fold. We invite them to the patient meetings and they meet the families, and suddenly they feel very connected. Every year we have more and more applications from around the world. It’s amazing to think a small patient advocacy organization is getting applications from as far away as China, Japan, and other countries who are interested in applying for grants and learning more about this condition.

Hardest lesson learned: For me it was that there are politics in rare diseases. I had a very Pollyanna vision of what it was going to be to work with people toward a common goal. Realizing there are people out there that don’t have the best interest of patients at heart, or they let other things get in the way of putting the patient at the center. That was hard for me to see. It started early on. We had a meeting in Germany with all of the groups from around the world. I was like, “Let’s do this. We’re an alliance. We’re going to move the needle and do research.” They were like, “Who are you and why should we trust you?” My heart was bleeding for wanting to help these patients and my son. The relationship has improved dramatically, but it just opened my eyes that not everyone is out there with the best intentions. Even when the intent may be good, their ways of going about it may not be easy.

Toughest organization decision: We had a couple of ways we were looking at organizing the organization early on. We hired someone to develop a strategic plan. Part of the recommendation was to build a patient advisory board. We didn’t realize a lot of these patients were never in a position where they had to facilitate a call or a meeting. Even though they were active and engaged, they weren’t getting a lot accomplished. The tough organizational decision was that we had these people who wanted to help, but we had to figure out a way to train them and show them how to lead the organization successfully. We ended up doing away with the patient advisory board. That was hard because these people had been very involved and dedicated and took pride in their role. The good thing that came out of that is that we ended up developing the regions. We worked with Global Genes. They came out and did a training of these regions and helped them understand how to facilitate, how to have an agenda, how to handle group dynamics. It was a key learning even though it was a tough decision.

Biggest missed opportunity: We’ve had a hard time figuring out the right way to approach applying for grants. We’ve missed a lot of opportunities to apply for grants we may not have known existed and missed out on additional funding we could have used because we didn’t know so many funding opportunities were out there.

Like best about the job: I love the feeling of helping people, rewarding them, and empowering them to take care of themselves and to be connected with physicians to have conversation to help improve their quality of life.

Like least about the job: Not having control in a situation where there’s a sick child. There was a child in Lebanon who contracted pneumonia. The mother kept texting me x-rays and doctors’ notes. They didn’t have access to a proper ventilator to help the child breathe. It was so frustrating to watch a family and not be able to help because of HIPAA Laws. I was trying to get them to fly to the United States and she was so distraught she couldn’t even sign the papers. That little girl died. That feeling of people having problems with their disease and not being able to help them is what I like least about the job.

Pet peeve: Dishonesty. There are people out there that sometimes may not represent themselves in a certain way. I wear my heart on my sleeve. I don’t have any tolerance for that.

First choice for a new career: Advocacy relations. There such an opportunity for companies to better engage with patients and partner with them in a meaningful way to really understand the needs of the patient community and the disease state and help in a way that goes beyond a therapeutic option. I would love to be able to take what I learned and apply that to help them get there.

Personal Taste
Most influential book: An Ordinary Day Kids with Rare Genetic Conditions by Karen Haberberg. It’s photos and short stories about families living with rare disease. It’s beautiful. It’s so compelling to see the picture of these children and mothers. The little things like helping them putting on socks in the morning or walking to school little—doing something that’s a daily task that becomes such a burden because of their disease. It brings to life what we do in a meaningful way.

Favorite movie: I like slapstick comedy like Dumb and Dumber. We deal with such serious and tough issues. I like things that make me laugh.

Favorite music: Top 40 pop and classic rock—The Police and Led Zeppelin

Favorite food: Pizza

Guilty pleasure: I like to shop.

Favorite way to spend free time: I love spending time with my family and love spending time with my husband and doing things that are quality time. It could be going to Costco. As long I’m with my family and having fun, that’s one of my favorite ways to spend time.

March 15, 2018
Photo: Deborah Fowler, president and founder of Soft Bones