Rare Leader: Erica Webster, Co-Founder and President, Hope for Hypothalamic Hamartomas

The Basics
Name: Erica Webster

Title: Co-founder and president

Organization: Hope for Hypothalamic Hamartomas

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Disease focus: Hypothalamic hamartomas (HH) are lesions/tumors that arise in the ventral hypothalamic region while the brain is forming in utero. The syndrome is commonly associated with a spectrum of clinical, endocrinologic, and psychosocial comorbidities, including refractory epilepsy, precocious puberty, and rage behaviors. Additionally, HH syndrome may include the evolution of an epileptic encephalopathy with developmental regression, and psychiatric and behavioral comorbidities. Neuropsychological, sleep, and endocrine disorders are also common.

With regards to epilepsy, for most the initial seizures are gelastic seizures. Gelastic seizures usually begin early in life, often at less than 1 year of age, and are difficult to recognize. Gelastic seizures are the most specific symptom associated with HH and often appear as laughter (often mirthless) or giggles that an individual cannot control and happen without any obvious trigger. In the very young, they are often mistaken for colic, acid reflux, or irritable bowel syndrome. They can occur daily, and for some there may be hundreds per day. The epilepsy symptoms can progressively change, with the appearance of other seizure types such as infantile spasms, atypical absences, focal, generalized tonic-clonic seizures and drop- attacks. It is often not until these other seizure types manifest that an HH is discovered. For many individuals, the process of getting a correct diagnosis can take months or years. Achieving an early and accurate diagnosis is critical and an appropriate surgical intervention is often recommended earlier in the treatment plan rather than a wait-and-see approach.

Headquarters: Waddell, Arizona

How did you become involved in rare disease: For me, being a rare disease advocate is extremely personal. In 2004, a few months after my daughter’s first birthday, I was changing her diaper and noticed blood. The pediatrician warned us that this type of endocrine issue could be the result of a brain tumor and ordered an MRI. My husband and I were devastated when the results showed a golf ball size tumor on her hypothalamus. Although her only symptom at the time was precocious puberty her medical team warned us that this type of tumor could cause seizures and behavioral problems. Within 6 months, our daughter was having more than 14 gelastic (laughing) seizures per day and multiple complex partial seizures per week. She spent most of her day recovering from the multiple seizures. We began to notice cognitive issues, particularly in her expressive speech. The progression through the other symptoms of HH continued, and in July 2006, she began to have hypothalamic rages. The onset of these rages was the turning point for our family in making the decision to move forward with brain surgery.

In 2007, the surgeons were able to resect 90 to 95 percent of the tumor, but due to the large size of her HH and the aggressive surgical approach our daughter struggled with multiple postoperative complications and long-term medical issues (diabetes insipidous, hypothalamic obesity, acquired Prader-Willi syndrome). Surgery did provide nearly two years of seizure freedom and the hypothalamic rages were kept at bay, but without warning they all returned.

In the early morning of December 11, 2011, my husband and I found our daughter unresponsive and having a seizure. We administered her emergency anti-convulsant and called 911. Grace passed away on December 11, 2011. Her death has been classified as Sudden Unexpected Death in Epilepsy.

Previous career: Worked in engineering and technology as a Mechanical Engineer and Business Analyst

Education: B.S. Mechanical Engineering from California State University, Sacramento

The Organization
Organization’s mission: Hope for Hypothalamic Hamartomas (HopeForHH.org) provides information, support and community to HH patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure.

Organization’s strategy: We are an international volunteer-based nonprofit organization founded by parents of children with HH. Our goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they obtained a correct diagnosis. Obtaining a correct diagnosis can take months and even years and often involves incorrect diagnoses and treatments. Once a diagnosis is confirmed, many families struggle with choosing an appropriate course of treatment, if one is even available. Regardless of treatment, managing the daily lives of HH patients and dealing with the long term and frequently devastating effects of HH requires ongoing information and support.

Funding strategy: We are an ultra-rare disorder which means most people, including those in the healthcare profession, have never heard of hypothalamic hamartomas. We have been very fortunate that our Hope for HH community has supported us through annual fundraising initiatives and events. In recent years we have begun applying for more larger grants to help support our goals to expand our funding of more HH specific research.

What’s changing at your organization in the next year: We are coming off a busy 2020 and 2021 with new patient support initiatives launched as well as funding a large genetic research project. As we move in to 2022, our team will be focusing on our 5th International HH Symposium to be held in Calgary, Canada in September. These symposia allow us to bring together senior, mid-level, and young investigators, clinicians, and researchers to focus on all aspects of the patient journey as well as discuss opportunities for future HH research. The ultimate goal is to improve diagnosis, treatment, and care of those living with this rare disease.

Management Style
Management philosophy: I am a planner at my core and find huge benefit from team collaboration. It is also very important to me that each member of the team feels empowered and valued by the contributions they make to drive our mission. These things definitely drive the way I approach our strategic planning, program execution, and day to day operations. Although at times I might drive my fellow board members a little crazy, I think they appreciate my planning, attention to detail and the fact they know they can count on me to deliver on any commitments I’ve made.

Guiding principles for running an effective organization: Planning, collaboration, communication, respect, and having a common mission to serve our community.

Best way to keep your organization relevant: We have partnered with other organizations and use these relationships for collaborations and to develop new ideas for better serving our community, spreading awareness, and fostering new research in hypothalamic hamartomas

Why people like working with you: I approached my fellow board members to get their perspective. Here are some of the things they had to say:

“Erica works to keep the focus on the community we serve and making change significant, measurable and achievable.”

“You always bring your heart, passion, and courage – there is never any doubt about why you are here.”

“Erica cares on a very deep level about the mission and the people.”

“On a more practical level, Erica allows others to bring ideas to the table, feel heard and all input is seen as valuable.”

“Working with Erica, I feel a part of a powerful team that is driving change in a world that sometimes makes me feel powerless as an individual.”

“Her compassion goes hand in hand with laser focus. She is not afraid to be direct when necessary and keep us on task, while making us never doubt our value as a member of a team that is stronger than its individual parts.”

Mentor: I would have to say my fellow board members. They are an extraordinary group of professional women who everyday advocate for our Hope for HH community.

On the Job
What inspires you: My daughter, Grace, my family and my Hope for HH family.

What makes you hopeful: Over the past few years we’ve been able to fund more specific HH research and drive much needed awareness among healthcare providers, clinicians, and researchers about this rare condition.

Best organization decision: Since we are geographically dispersed, we do all meetings and collaborations virtually, however, we set one time a year to meet in person for our strategic planning and board development training. This allows us to reconnect and every time we leave energized and ready to conquer the next year’s objectives.

Hardest lesson learned: We are a strong and passionate group of advocates for those with HH, but come to the table with different personalities, perspectives and life experiences. We realize our biggest achievements when each member participates, feels heard and is empowered to do what they do best.

Toughest organization decision: We currently have five board members and 15 volunteers. At the moment we are a 100 percent volunteer working board but hope to expand to at least one full-time paid staff in the near future to allow us to broaden our impact.

Biggest missed opportunity: Not holding online community groups sooner. We held our first sessions last year and the response from our community was fantastic.

Like best about the job: Supporting the families as they travel on this HH journey.

Like least about the job: Any of the necessary ‘busy’ work that we must do as a nonprofit organization, that doesn’t have a direct impact on our community.

Pet peeve: People who don’t hold themselves accountable.

First choice for a new career: If I were able to go back in time, I would choose a career in medical research.

Personal Taste
Most influential book: The Walk series by Richard Paul Evans really resonated with me after losing my daughter, Grace. It’s a story of trying to find a new way of living with joy even when you are missing a piece of your heart.

Favorite movie: Childhood favorite is Grease, but currently I’m a huge John Wick fan.

Favorite music: I enjoy a mix of music including country, blues, Christian, and rock.

Favorite food: I love a good Thai curry.

Guilty pleasure: My afternoon cup of coffee.

Favorite way to spend free time: With my husband, Perry, and our children, Sarah and Garrett.