Rare Leader: Julie Raskin, Executive Director, Congenital Hyperinsulism International
April 4, 2019
Name: Julie Raskin
Title: Executive director
Organization: Congenital Hyperinsulinism International (CHI)
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Disease focus: Congenital hyperinsulinism (HI) is the most frequent cause of severe, persistent hypoglycemia in newborn babies and children. In most countries it occurs in approximately 1/25,000 to 1/50,000 births. About 60 percent of babies with HI develop hypoglycemia during the first month of life. An additional 30 percent will be diagnosed later in the first year and the remainder after that. With early treatment and aggressive prevention of hypoglycemia, brain damage can be prevented. However, brain damage can occur in children with HI if their condition is not recognized or if treatment is ineffective in the prevention of hypoglycemia.
Headquarters: Montclair, New Jersey
How did you become involved in rare disease: I became involved because my second child, my son, was born with congenital hyperinsulinism.
Previous career: Director of Eurasian programs at the Center for War, Peace, and the News Media at New York University, working on a project with and about the Russian news media.
Education: Bachelor’s degree from the University of California, Berkeley; and master’s degree from the State University of New York at Albany, both in Slavic languages and literatures.
Organization’s mission: Our mission is to improve the lives of people born with congenital hyperinsulinism and we focus on research, awareness, and advocacy. We support those with the condition through our network of people who are also affected, by being there for them as they go through life with this condition, and helping them gain all the knowledge they need to have the best possible outcome. We provide information about treatment centers, and we help them find resources to better access treatment. We’re also focused on research. There is one medication on the market for those who respond, but there are many who don’t respond, so we’re on a mission to find treatment for all. We raise awareness of the condition to prevent death and brain damage. It is important to have an early diagnosis to prevent neurological damage, organ damage, or death. That is a big focus for us.
Organization’s strategy: The organization’s strategy is to work with the whole community of people who are passionate about finding treatments, awareness and support. We work with patient advocates all over the world and people affected by the condition, and we work with leading physicians and others in the healthcare profession who are also passionate about this work. And we work with biotech and pharma companies working in the space, as well. By collaborating, and being tireless about this, we hope that life will continue to improve for people living with the condition.
Funding strategy: Our funding strategy is to raise as much funding as possible! It’s hard work and we hope to grow our funding community. We receive funding from individuals, foundations, and companies. We hold a really great event once a year that we call the Sugar Soiree. We call it the Sugar Soiree because the central issue for those with the condition is that they have low blood sugar; sugar is a central theme. Our event brings together people who are supportive and also have a great interest in being a part of the community, to make life better for people living with the condition.
What’s changing at your organization in the next year: Last year we launched the HI Global Registry, which is a patient-powered research project. It consists of thirteen surveys and it is hopefully going to become a natural history study, showing the progression of the condition and life with the condition. Over time, it will be a resource to better understand the condition and provide researchers with a wealth of information about this disease. We just launched at the end of last year and it’s growing. We hope to have a lot more participation this year. The HI Global Registry is housed on the NORD IAMRARE platform. Another change is this is the first year where, for the entire year, we’ll be supporting genetic testing for congenital hyperinsulinism for anyone in the world who cannot afford it. And that’s through a partnership with the University of Exeter in the United Kingdom The physicians of the patients apply to the University of Exeter for the testing, which is mostly focused on a targeted panel of genes known to be affected and to cause congenital hyperinsulinism. For the first time this year we are also collaborating with German and Austrian patient organizations on our European conference. The following year, we’re working with the UK patient advocacy organization on a conference in Liverpool.
Management philosophy: My management philosophy is to collaborate as much as possible and find ways to do that as successfully as possible.
Guiding principles for running an effective organization: Guiding principles are to be honest, present, and focused. But, to allow for some rabbit trailing, just enough, to stumble on great ideas. And to be trusting and to delegate as much as possible—and to consider the personal and professional growth of the people who work at CHI because when people love what they do and feel empowered, they work hard.
Best way to keep your organization relevant: I’m going to turn that one around and say we would love to be irrelevant. The organization will always be relevant until everyone with the condition has the treatment they need, and everyone is diagnosed in a timely manner. If we ever became irrelevant, if there were ever a time when there was a cure, or everyone was treated and everyone was diagnosed in a timely manner, we’d be very happy not to be relevant.
Why people like working with you: First of all, they love the cause and they’re really dedicated to the cause, and I’m working on this cause. I’m not sure it’s so much about me. If they do like working with me, it’s because I am honest, and I do like to have fun while doing this work. I’m also not conflict averse. It’s okay to have conflict and then learn from it. I think it’s rewarding to work at CHI because we have a wonderful community. I think that’s why people like being a part of it.
Mentor: I don’t have just one. I meet a new mentor every day. I’m always meeting amazing people. My first mentor would be my son, who was born with the disease, and then everyone who has it. I learn so much from them about living with hyperinsulinism, and being able to live with it, and being able to focus on the rest of life, and not being brought down by having the condition. My dad was a great mentor to me. He was a person-centered psychologist, an excellent listener and very empathic. In the rare disease community, there are so many really great leaders who are inspiring and making incredible progress for their communities and all in the rare space—John Crowley at Amicus Therapeutics, Pat Furlong, and on and on. And then people who are running little organizations, too. I have a ton of mentors.
On the Job
What inspires you: The people who have hyperinsulinism inspire me. The work that scientists are doing to find better treatments inspires me. Our incredible board members, and our board chair Davelyn Hood, are incredibly inspiring. She’s a parent, a physician and the principal investigator of our Global Registry, and works so hard. She’s also the principal investigator of our Global Registry. Isabel Calderón, who just stepped down as vice president but is still on our board, is also an investigator and so dedicated and smart/ It is an honor to work beside them as an investigator on the HI Global Registry. I’ve had the good fortune to raise my son together with this incredible group of parents who have kids with this condition. We came together starting in 1999, on the internet, on a listserv. There’s an international group of women, other hyperinsulinism moms, who have been close for many years. We call ourselves the harvest moms because this is the harvest time now. Our kids are grown, and we now have the time and space to give back to those moms and younger kids living with the condition.
What makes you hopeful: Seeing that there are so many exciting projects now. As I said, there are lots of biotechs working on new treatments. Our Global Registry is taking shape and growing, and I hope that will attract more and more companies into this space. There are brilliant physicians who are caring for patients at leading centers. Technology is moving at lightning speed and the technological innovations are going to help with our condition in terms of blood sugar monitoring and hopefully, with a gene therapy, one day. There’s lots to be opeful about.
Best organization decision: Launching the HI Global Registry.
Hardest lesson learned: The hardest lessons learned, I would say, are that it often just takes a long time to get something off the ground. BioNJ has a fantastic slogan “Patients can’t wait,” but at the same time it’s ironic and counterintuitive that patients also have to be patient.
Toughest organization decision: The toughest organization decisions are always those where we want to do something but might not have the funding yet. We’d like to have our registry in many languages, but we had to launch first in English.
Biggest missed opportunity: There are always opportunities and it’s not that they’re missed, it’s that sometimes through triage, we have to choose. I don’t have one in particular.
Like best about the job: I like everything about the job. I like getting to see the shining faces of those who are living with this disease every day. And I get to do that through the Internet and social media, and at conferences and events, and we have visitors to the office. The only thing I don’t like about the job are the limited resources.
Like least about the job: That we can’t do more, can’t help every patient family with all their needs.
Pet peeve: Typos, and I make them myself!
First choice for a new career: Politician or novelist
Most influential book: Anna Karenina by Leo Tolstoy
Favorite movie: Doctor Zhivago
Favorite music: George Philip Telemann
Favorite food: Sushi
Guilty pleasure: Glass of wine
Favorite way to spend free time: Hiking in the Catskills with my family and friends
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