RARE Daily

Rare Leader: Heidi Edwards, President and Founder, Sister’s Hope Foundation

April 22, 2021

The Basics
Name:  Heidi Edwards

Title: President and Founder

Organization:  Sisters’ Hope Foundation

Social Media Links:

Disease focus: Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) is a rare neurological disease caused by an autosomal dominant genetic mutation in the CSF1R gene (colony-stimulating factor 1 receptor). ALSP was previously known as two diseases: hereditary diffuse leukoencephalopathy with spheroids (HDLS) and pigmentary orthochromatic leukodystrophy (POLD). After the discovery of the gene mutation, these two diseases have become known as one entity: ALSP. ALSP is one of a group of adult-onset leukodystrophy disorders. Because it is a rare disease, the actual number of cases are unknown.

Headquarters: Lebanon, Pennsylvania

How did you become involved in rare disease: My aunt, uncle, mother, and sister passed away from the disease. My twin sister is battling the end stages of the disease. I spent years researching ALSP and trying to find other families with the disease. I want to make sure families have resources available to them at the time of diagnosis.

Previous career: Human resources

Education: Bachelor of Arts in Psychology from Alvernia University and Master of Arts in Human Resource Management and Labor Relations from Saint Francis University

The Organization
Organization’s mandate
: Sisters’ Hope provides education, awareness, and support. We advocate for further research and funding to improve treatment options. We connect patients and families with HDLS/ALSP to build community and support and provide financial assistance and resources to those in need. I am an expert in the disease from a caregiver perspective. I have seen this disease firsthand with an aunt, uncle, mother and two sisters. Doctors have not seen the disease progression at a caregiver level, which is so important when educating families and clinicians about the disease. Families with the mutated gene and those that suspect the disease may be affecting a loved one now have a resource and support that was not available to them prior to Sisters’ Hope Foundation. Through Sisters’ Hope Foundation, we envision a world where those affected by HDLS/ALSP have support and knowledge, leading to a better quality of life, and one day, the first survivor of HDLS/ALSP.

Organization’s strategy: The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP by educating the public to increase awareness around this rare disease, advocating for further research and funding to improve treatment options, connecting patients and families with this diagnosis to build community and support, providing financial assistance and resources to those in need. Through Sisters’ Hope Foundation, we envision a world where those affected by HDLS/ALSP have support and knowledge, leading to a better quality of life and one day, the first survivor of HDLS/ALSP.

Funding strategy: Fundraising is done through raffles, donations, walks and runs, golf outings, merchandise sales, corporate sponsors.

What’s changing at your organization in the next year: Sisters’ Hope Foundation started in June 2020. This is our first year in operation. We are the first foundation available to support HDLS/ALSP. We will be adding virtual support groups, more education and awareness, connect more families with genetic testing for this rare disease and start a physician advisory board.

Management Style
Management philosophy: I believe management should provide guidance, direction, leadership, and lead by example. Providing a fun and creative environment leads to more productive employees who strive to be the best they can be for Sisters’ Hope Foundation.

Guiding principles for running an effective organization: Lead by example. Understand the value of listening. Work together to achieve more. Allow creativity, innovation, and change. And, have fun.

Best way to keep your organization relevant: Connect with industry experts including physicians, biotechnology companies, and geneticists so we can provide the most up to date information on treatment options for HDLS/ALSP. Continue to educate the community about the disease and connect with and include affected families in the foundation’s goals.

On the Job
What inspires you: Making memories with those I love and finding a bigger purpose for my life which is finding a cure for HDLS/ALSP.

What makes you hopeful: My family has been involved in research at the University of Pennsylvania Center for Neurodegenerative Disease and the Brain Bank as well as The University of Minnesota. These priceless contributions to research will save future generations. We now have clinicians interested in HDLS/ALSP and working towards a cure.

Best organization decision: To trust others and accept help. We as a family have felt alone for a long time. We are now connecting with others and hearing their stories. We have professionals helping us grow our mission every day.

Hardest lesson learned: To gain a better understanding of this disease and to eventually find a cure, more people will have to die, more people will have to take risks in clinical trials and bone marrow transplants. My sister, Heather passed away in August of 2020 from complications from a bone marrow transplant. It was experimental, but it gave us hope and a possibility of having a cure for HDLS/ALSP.  

Toughest organization decision: We are still in startup mode, but I would say the toughest decision so far was deciding who do I trust enough to ask them to join our board for Sisters’ Hope. I needed to find people who are as passionate about HDLS/ALSP as I am.

Biggest missed opportunity: I started writing a book about my family almost ten years ago. I feel I should have kept my head down and accomplished that goal.

Like best about the job: I love hearing from families who have lost loved ones or have been diagnosed with the disease. We finally have a way to connect and have each other to lean on.

Like least about the job: Knowing there are other families experiencing this terrible disease.

Pet peeve: When someone tries to make me feel better by telling me a story about their 89-year-old grandmother who had Alzheimer’s. Losing a mother at age 57, a sister at 45 and watching my 44-year-old twin sister need help with every aspect of daily living is not the same as someone who has lived a long life. Nothing is more devastating as seeing an amazing wife and mother leave behind young children and since this is an autosomal dominant gene you may have passed the gene on to your children.

First choice for a new career: Motivational speaker for rare disease caregivers and families

Personal Taste
Most influential book: The First Time by Joy Fielding

Favorite movie: All Hallmark movies because there is always a happening ending.

Favorite music
: Country

Favorite food: French fries

Guilty pleasure: Cupcakes and sweets

Favorite way to spend free time: Doing anything with my husband and son. Especially riding bikes on our beautiful trails.




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