Name: Liz Marfia-Ash
Title: President and Founder
Organization: GRIN2B Foundation
Social Media Links:
Disease focus: The GRIN2B Foundation is focused on GRIN2B-related neurodevelopmental disorder. GRIN2B is a gene located on an individual’s 12th chromosome and is part of a family of genes responsible for sending chemical messages to the brain. Genetic variations to the GRIN2B gene change how the brain receives these messages. The most common symptoms are hypotonia (low muscle tone), global developmental delay, some form of intellectual disability, and non-verbal or limited speech. For now, our patient population is mostly children, but we do know of a few adults who have been diagnosed.
Headquarters: Niles, Illinois
How did you become involved in rare disease: In 2014, my 18-month-old daughter was diagnosed with a variation on her GRIN2B gene. This diagnosis explained all of her developmental delays, hypotonia, irregular EEG, and vision issues. At the time, the disorder did not have a name and we were told there were approximately only 10 known cases. A mom in Alabama had formed the GRIN2B Parent Support Group on Facebook and I was the second member to join. Within the first year, about 30 other families worldwide joined us. I realized our Facebook group was limited and there were likely many other families that would never join our group. We needed more exposure, so I wrote a blog for The Mighty, and also created a website so that future families could search GRIN2B and find something positive instead of the bleak scientific papers we were given. As I was developing the website, my sister-in-law suggested that I should start an organization. I recruited my husband and some of the first parents I had connected with on Facebook and we formed GRIN2B Foundation in 2017. It was not something I ever expected to do with my life. I kept looking around, hoping someone else would come along and start something, but that didn’t happen. I dug in, talked to a bunch of other rare disease organizations for guidance, and kept putting one foot in front of the other.
Previous career: I’m actually still working full-time as a project manager at Peak Effects Marketing in Chicago. I’ve worked there since 2012 and it’s really the perfect fit for me. It’s a small company and I have a supportive boss who allows me to be flexible with my schedule (I have awesome co-workers too). Between my three kids (ages 1, 5, and 9), and running the foundation, I am coming and going a lot, or working from home at times. Prior to this job, I worked for many years in the reality television industry, as both a line producer (managing budgets) and a story producer. Those skills have served me well in leading the foundation. It’s definitely tricky balancing it all, but I have found ways to be creative with time management. I do a lot of conference calls on my way to or from work, or I use the talk-to-text feature on my phone to email notes to myself. My commute time is actually when my brain is on overdrive and I come up with a lot of creative ideas.
Education: Bachelor’s degree in theatre arts from Eastern Illinois University with a minor in creative writing
Organization’s mandate: We are a parent-run organization dedicated to furthering research on the GRIN2B gene and providing support and education to the small, but growing community of individuals and families impacted by a GRIN2B diagnosis.
Organization’s strategy: We are equally committed to supporting families, promoting awareness and funding research. We spent most of 2017 waiting to receive our 501(c)3 status. We didn’t really start until 2018. Last year, our focus was on awareness and support. We created the first GRIN2B awareness month last March and will carry that on as an annual event. For support, we organized our first family conference in Atlanta last fall, and we manage a very active private group on Facebook for parents, in addition to running all our public social media accounts. We made a big fundraising push towards the end of last year and are working to establish our first research grant cycle in 2019.
Funding strategy: This is a work-in-progress. We just started fundraising last year and really only had time to focus on social media fundraisers. We know we need to build on that. We recently established our first fundraising committee and we’re working on several fundraising events for this year, as well as coming up with guidelines and ideas for families to host their own fundraisers. We are also investigating different donor management software we can use to help us manage our database better and enable us to add on email marketing as well. Eventually, we’ll look into adding on corporate sponsorships and grants.
What’s changing at your organization in the next year: We are working with our medical advisory board to establish a research grant cycle. We are collaborating with other gene patient groups that are related to our gene.
Management Style: I try to figure out what people like to do and what they are good at and have them focus on that. There’s really no use trying to fit a square peg into a round hole. I could spend all of my free time researching the areas where I lack expertise, but that’s exhausting and not realistic. We are always on the search for individuals with specific skillsets who want to work with us. I also focus on gratitude a lot. In addition to our all-volunteer board and committee members, we have many others who volunteer their time helping out with our newsletter, graphics, web design, and business advice. I have found that sharing my passion and saying “please” and “thank you” go a long way to inspiring people to help our mission.
Guiding principles for running an effective organization: Professionalism is key. Since our organization was formed by a group of parents who met on Facebook, it could be very easy to think of this as a social club, but it’s not. It’s a business that provides a service and we take that very seriously. Everything we do that represents us, whether it’s a social media post, a newsletter, merchandise, an event; it all is done very thoughtfully and with much intention. I believe in the power of words and every word we use is a reflection of how we operate and what we believe in. We are big on honesty and integrity as well. If someone asks us a question and we don’t know the answer, we don’t guess. We are humble about what we don’t know. I think it makes us more relatable that way. Families aren’t shy about contacting us because they see we struggle like them, but we’re fighting hard to create change.
Best way to keep your organization relevant: We stay on top of social media trends and update all our social media platforms and website. I have found that people reach out to us via different methods, depending on their age. We really need to stay on top of everything from Twitter, Facebook, Instagram, email, etc. I have many families that contact us through our website that never end up joining our Facebook group. Our disorder is newly discovered, and we don’t quite have an organized, centralized registry yet. Connecting with as many patients as possible is vitally important.
Why people like working with you: I think people like that I am hard-working and detail-oriented, but also nice, respectful, and a good listener. I care about all our families and their well-being. I approach all that we do from a place of light and empowerment.
Mentor: I have many. My boss, Karen Gold, is a wonderful mentor. Author Brene Brown writes a lot about the importance of leading from heart not hurt, and Karen is a great example of someone who leads from a place of positivity and fosters a warm environment for her employees to work in. In terms of specifically understanding the medical side of our disorder, one of our top researchers, Stephen Traynelis, professor of pharmacology at the Emory University School of Medicine and a member of the GRIN2B medical advisory board, has been very generous with providing us with guidance. There are also so many people that I have connected with through the Global Genes Foundation Alliance that have shared their advice and resources. But I have especially learned much from Amanda Jaksha of The International Foundation for CDKL5 Research, and Heather Norwood, formerly of The International FOXG1 Foundation.
On the Job
What inspires you: I am a big fan of inspirational quotes, especially any from J.K. Rowling, Ralph Waldo Emerson, and Brene Brown. Also, with my theatre arts background, I am very inspired by the arts. Live theatre, certain songs, and movies really move me. Specifically, in terms of rare disease advocacy, the principles of the Thrive for Rare initiative have been very inspiring.
What makes you hopeful: Our patient community makes me hopeful. It’s been truly amazing to witness everyone supporting one another in our parent group on Facebook, or the bonds that were made in person amongst families at our conference last fall.
Best organization decision: Staying positive and true to our morals. We try to focus on our strengths. We have figured out what we are naturally good at and we focus on that for now. My strength is in being a storyteller. My husband is on our board, and we both have theatre degrees and writing backgrounds. I have learned that telling a compelling story is essential if you want people to support your work and help fund your mission. On the flip side, we recognize our weaknesses—we are not scientists and have a lot to learn on the drug development end. We know we need help in this area, and we are taking our time to consult with our advisors and other industry professionals.
Hardest lesson learned: We can’t do it all. I spend a lot of time looking at what peer organizations or mentor organizations are doing on their websites or social media. It’s a blessing and a curse. Often, I get a lot of good ideas or I can see that we’re on the right track. But sometimes, my eyes get too big for my head and I start to panic about all the things we’re not doing yet. Also, because we are the first organization supporting GRIN2B, anyone who gets diagnosed is going to look to us for answers and support. Our numbers (that we know of so far) are only in the hundreds, but we get requests from all over the world. And, as much as we honestly try to serve everyone, we are not necessarily equipped to handle every request that comes our way. We’ve really had to learn that we have to set limits.
Toughest organization decision: The toughest decision was to commit ourselves to focusing on both supporting families in the present and funding research that will help patients in the future. It would certainly be easier if we put all our focus into just one thing—treating and curing our children. Doing one thing is always going to be easier than doing multiple things. But our organization believes it is possible to both support our children for who they are in the present (not who we wished they would be) and, simultaneously, strive for advancements in medicine so that they can do and be more.
Biggest missed opportunity: We’re still so new, I don’t think we’ve missed any opportunities yet. There is a lot of room for us to grow. We have a whole list of ideas. It’s just a matter of time and resources in order for us to implement them.
Like best about the job: Anything related to marketing, writing, or support. I love coming up with ideas for helpful graphics or T-shirt designs or curating content for our social media pages. I also love connecting with families one-on-one, either through email or Messenger or meeting in person.
Like least about the job: I don’t like saying “no” to people. I don’t like trying to keep up with my email inbox. I am a bit OCD about keeping my inbox light, but I can never seem to get it to go below 50. I try to carve out time to follow up on everything and/or delegate is a bit of a daily struggle.
Pet peeve: My pet peeve is negativity of any kind, especially unconstructive criticism and/or inflexible ways of thinking. Raising a child with a rare disorder (plus two more) and working two jobs is hard enough, I don’t have any time in my life for drama, negativity or disrespect. I try to steer clear of any of that as much as possible as it’s not a good use of my time and distracts from our mission.
First choice for a new career: Children’s book author. I have a really great idea and I’m trying to carve out time in 2019 to work on it.
Most influential book: Nonfiction: Rising Strong: How the Ability to Reset Transforms the Way We Live, Love, Parent, and Lead by Brene Brown. Fiction: the entire Harry Potter series
Favorite movie: Clueless
Favorite music: Right now, it’s the soundtrack to Harry Potter and the Cursed Child
Favorite food: Cheese
Guilty pleasure: I am hooked on the tv show Riverdale.
Favorite way to spend free time: With family and friends, watching movies, reading books, and doing Pilates