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EXCLUSIVE! A Personal Interview with Rita Colwell in Advance of Her Book “A Lab of One’s Own”

EXCLUSIVE! A Personal Interview with Rita Colwell in Advance of Her Book “A Lab of One’s Own”



Rita Colwell is perhaps best known for her research on the pathogenic bacterium Vibrio cholerae. But the designation of pioneer is a label befitting Colwell for far-reaching contributions to many other areas, including her decades-long fight against sexism in a male-dominated field.

Colwell’s unique perspective on sexism in science is now able to be explored in her book, A Lab of One’s Own: One Woman’s Personal Journey Through Sexism in Science, which will be released on August 4th.

Colwell has served as a long-standing member of the faculty of the University of Maryland since 1972 and was the first woman to serve as director of the National Science Foundation (from 1998–2004). As the president of the Rosalind Franklin Society, Colwell continues her leadership for the recognition and promotion of women in science.

Julianna LeMieux, GEN’s senior science writer, recently had the chance to ask Colwell about her career, the lessons she learned along the way, the messages she would like to pass on to the next generation of female scientists, and why she wanted to add another book to her already impressive CV. The interview, which appears below, has been edited for length and clarity.

What prompted you to decide to write a book now? What was the motivation or inspiration?

Colwell: I’m at a stage in my life where I can be as fully candid as I wish. With regards to sexism in science, I believe some things have changed, and some have not. Therefore, I thought it would be a good opportunity to provide a bit of guidance for the next generation, or two, of women.

There are experiences I can share about different stages of my career that describe an overall pattern of incidents that many women face. I wasn’t really, initially, enthusiastic about writing a book advising women in science. And it’s turned out to be rather more metaphorical than an instruction manual. It’s certainly not a catechism.

The book has taken about five years. It all started when my co-author [Sharon Bertsch McGrayne] called and said she would like to write about my work on cholera. I had been thinking about writing a book anyway, so it was a good opportunity to collaborate. But then it morphed into a kind of autobiography and focused more on women in science. It made sense because so many of my experiences have been shared by others. In fact, the general message of the book is that the experiences that women have in this vein are not unique. There are so many women who have experienced some of the same offensive behavior that I have had to deal with. Superb scientists such as Jocelyn Bell, Maria Meyer, Nancy Hopkins, and so many others. They faced similar traumas and kept on going.

And, it’s not their fault—it’s the system.

In your career, what helped you to persevere? What was the key?

Colwell: Just sheer, dogged determination to succeed. I knew I could. I had been supported by so many others and so well as a young student. They gave me the confidence that I could do it and I felt very strongly that when I was told that I couldn’t, or obstacles were put in my way, I was absolutely set to succeed. I was not going to give up. There were times when, sure, I would be a bit despondent.

But I climbed out of that trough even more determined and invigorated to make sure I got done what I needed to do.

Sexism can take many forms. What are the most damaging, do you think, for women in STEM?

Colwell: What is really discouraging is to make a discovery or have a really innovative idea and have it automatically discounted—not even discussed, just pushed aside—as if it could not possibly matter because it was a woman who had the idea or who made the discovery. A snide, critical remark that discounts everything you’ve done is the harshest kind of put-down, especially when it happens over and over and over again. That is tough. And, especially hard when it is from individuals for whom you know that your own colleagues don’t have the highest respect for their science. And your colleagues don’t call them out for it. But being sexist is a character flaw.

In contrast, there are people like John Liston and Buck Greenough. Both are men of immense accomplishment.  Buck is a medical doctor who has worked tirelessly in developing countries, and has tremendous compassion and empathy. Helpful suggestions from Buck meant so much because they were given to be supportive. And, that’s really empowering. Unfortunately, I didn’t find as many John Listons and Buck Greenoughs in the world as I would have wished. But there are many such men out there and it is so important when they step up.

In what ways has sexism in STEM gotten better? In what ways is it the same?

Colwell: I don’t think that today’s misogyny is as overt, or unabashed, as the kind that we had to deal with years ago. I don’t think any department chair today would tell a female student with a straight A average that they “don’t waste fellowships on women” which is what I was told when I was an undergraduate just starting out on my career.

If you read the report from the National Academy of Sciences, it describes misogyny and sexism that one might characterize as ranging from the criminal to the clueless.  The clueless make remarks that are intended to be kind, like, “Oh, don’t you look pretty today.” Well, I never wanted to be told I looked pretty. I would rather hear that my idea was intriguing or brilliant. I would never think of commenting on a male colleague’s appearance in the laboratory. It’s a double standard.

What are your thoughts on the unusual moment that we are in right now with the growing divide between male and female researchers (and especially researchers studying COVID-19) with children staying home and work-life balance taking on a whole new meaning?

Colwell: It’s a really difficult situation because, even if you are lucky enough to have someone to help take care of your young children, it may mean that you’re exposing them to COVID-19. So today scientists and physicians with young children have to deal with a heavier weight of guilt and fear.

I raised two children, but I had help at home. I also had an incredibly supportive husband. We were married for 62 years and I miss him intensely every single day since his passing. He was a source of good advice and always helpful in every way.

When I had my second child, she was born in November during the Thanksgiving holiday. In those days, it was assumed that if you were really serious about your job, you would go right back to work. I was back at work within two weeks. It was just before Christmas and at the department holiday party, one of my colleagues came up to me and very kindly said, “I’ll be happy to teach one of your classes when you have the baby.” I looked at him and said, “I had the baby and I’m already back teaching.”  He was kind… but clueless.

I tried, in my way, to spend as much time as possible with my daughters. When my oldest reached 14, I brought her with me on a lecture tour I had scheduled… to Tokyo, Bangkok, Bombay, Paris, and London. I received permission from her school for her to do her assignments while we were away. So she packed her backpack with her books and papers, and we traveled together for three weeks. That way, she got to see that the whole world is not like Montgomery County, Maryland. And I took my younger daughter, who aspired to become a physician, with me on one of my travels to Bangladesh and to Mali, Africa. She eventually went on to medical school, earning an MD/ PhD, the latter in Tanzania on women’s health.

What are you doing now during COVID-19, while staying with your daughter in Halifax, Canada?

Colwell: I’m doing some very interesting work now on COVID-19. The company that I founded, CosmosID, is carrying out some studies with the Maryland Dept. of Environment and Dept. of Health to detect SARS-CoV-2 in wastewater as a measure of success of public health measures to reduce the incidence of COVID-19 and to inform future public health decisions. It has been shown by others that asymptomatic individuals shed virus in the stool and that people who exhibit symptoms can shed the virus for several weeks long after recovery.

I’ve also been doing a lot of work using satellite sensors to predict cholera epidemics. And, that has proven really successful. We’ve been working with a British aid agency, UNICEF, and NASA to provide prediction of cholera risk in Yemen so that supplies, personnel, and safe water can be delivered effectively. We are working hard to utilize a similar model for COVID-19.

You’ve accomplished so much. How many hours of sleep do you need?

Colwell: Ha! During my heyday, I would get by on four or five consecutive hours of sleep, which is how I could do so much traveling. But I prefer six or seven hours, just like any other normal human being.

You talk about working on the Anthrax project in the book. Why was that such an important project?

Colwell: I chaired a team of representatives from all of the agencies, including NSF, NIH, DHS, USDA, DOE, DoD FBI, CIA, and others, who contributed to tracking down the perpetrator of the Anthrax bioterrorism crime. We had no formal directive because we knew, if we did, we would be subject to the Freedom of Information Act and the FBI and CIA who were conducting a criminal investigation could not participate. So, we worked voluntarily, meeting every week for five years. We were men and women working together, meeting every week in classified surroundings for an hour on Friday afternoons. Then, every month after that. It was five years in total that it took  to track down the source of the anthrax. We worked together extremely well. For all of us, we consider it one of the highlights of our careers.

Besides the anthrax work, what has been a highlight of your career?

Colwell: The most enjoyable experience I’ve had was when I received the Stockholm Water Prize in 2010 because the King of Sweden officiates and the event is treated like the Nobel Prize ceremony—with the men wearing tuxedos rather than “white tie and tails”.  I did also have the opportunity as Director of NSF to attend a Nobel ceremony and at that event, Jack [my husband] looked smashing in his tie and tails. But, the reason why the Stockholm Water Prize was such a highlight is that I brought my entire family, my children, and grandchildren, with me on the trip and we spent two weeks in Sweden having the best time.

Is there any place in the world you would like to visit but haven’t yet?

Colwell: I’m regretful that I’ve done so much work in Peru, but never had enough time to go to Machu Picchu. I was in Peru several times to study cholera, in the early 90s when a major cholera outbreak occurred in Latin America. So that’s on my list.

Do you have a favorite guilty pleasure?

Colwell: Vanilla ice cream.

Do you participate in sports or yoga?

Colwell: I started jogging when I was in my 30s which has been a very good thing to do. I like that it keeps me in shape, but what I really enjoy is running in different countries all over the world. I’ve run in Bangladesh, European cities, Ireland, etc. I enjoy running when I go to meetings, because you get to really see a city as it is. In a car, you don’t really get to know the sights, sounds and personality of a city.

Also, my husband and I raced sailboats for 25 years. We were dinghy racers. My job was to handle the jib and the spinnaker. He was the tactician and his hand was on the tiller. He was a real champ. We must have collected 40 trophies over the years.

You have received numerous, prestigious awards during your career, for example the National Medal of Science bestowed by President George W. Bush. But women are far less likely to be nominated and win awards. What impact do you think that has on women in science?

Colwell: It’s depressing when outstanding women are overlooked. I know for a fact that I was deliberately prevented from receiving a specific award at a point very early in my career when it would have mattered a lot. But again, I look at it as a flaw of those who stand in the way of women from receiving awards.

It makes a big difference in a career for deserving women to receive awards and prizes, recognizing their outstanding research. This is where the Rosalind Franklin Society and its benefactors are providing a really important service.

But I should also say that I have learned it is very time consuming and a lot of work to nominate individuals for awards and to write the necessary letters for promotions and other recognition. My assistant, Vickie Lord, and I find ourselves devoting sometimes a day a week, at least, writing letters and preparing nominations. I’m always delighted when the individuals that I nominate win. But it is a lot of work. Fortunately, women scientists are recognizing that this is an important part of our responsibility… to help younger scientists, especially women scientists, coming up in the ranks.

What advice do you have for women in STEM today?

Colwell: I would say to find a posse, or create one, and persevere. I’m very pleased that the ADVANCE program (Organizational Change for Gender Equity in STEM Academic Professions) at the NSF that I helped launch has funded programs all around the country where women have an opportunity to get together and talk and share experiences. Knowing that you’re not alone is a big help.

The post EXCLUSIVE! A Personal Interview with Rita Colwell in Advance of Her Book “A Lab of One’s Own” appeared first on GEN - Genetic Engineering and Biotechnology News.

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Canada’s productivity crisis linked to government overspending

Dubious government investments are stunting our standard of living While government policies can benefit societies and economies, they often produce the…




Dubious government investments are stunting our standard of living

While government policies can benefit societies and economies, they often produce the opposite results.

Recent concerns highlight Canada’s worrying trend of dismal productivity growth and growth prospects, with several international bodies predicting minimal growth in Canadians’ real (adjusted for inflation) personal income over the next 30 years (an entire generation).

To address this productivity slump, governmental strategies have varied.

One strategy has emphasized workers’ skills, with authorities advocating for youth to pursue marketable technical trades rather than conventional university degrees.

Another strategy has been to foster a more extensive, intensive, and robust innovation ‘ecosystem’ coupled with venture capital and institutional investor funding. Addressing permitting obstacles and other regulatory impediments are another approach.

Yet, despite the potential of these strategies, the persistent actions of both federal and provincial governments challenge productivity growth. Notably, these governments often allocate extensive taxpayer funds towards projects with minimal returns on investment.

Over the years, provincial utilities like BC Hydro, Manitoba Hydro, and Nalcor (an umbrella company for Newfoundland and Labrador Hydro) have seen significant overruns. The financial commitment to these projects, such as the Site C dam, Keeyask, Bipole III, and Muskrat Falls, far surpassed initial projections.

A staggering $43.2 billion was spent, compared to initial expectations of $23.9 billion, to produce just a couple of gigawatts of ‘cheap’ power – just enough for a million households. For perspective, the same funds could have been channelled into nuclear energy, producing more power and less environmental harm.

In addition to these massive provincial governmental blunders, the federal government lavished $35 billion in tax relief subsidies for just three electric vehicle (EV) battery plants. According to the federal Parliamentary Budget Officer, two of these plants ‘might’ be paid off in ‘as soon as’ 20 years.

Topping it off is Ottawa’s purchase and expansion of the Trans Mountain Pipeline, where government-induced regulatory obstacles continue to explode costs. Ottawa has now spent a staggering $30.9 billion to expand the pipeline, almost six times the original estimate of $5.3 billion. It will be impossible to recoup anything near what is being spent. For more than eighty percent of its route, the new, parallel Trans Mountain line follows the existing line: an additional enormous expense accrued from massive mismanagement.

A common thread weaving through these projects is the government’s willingness to finance ventures that initially seemed economically questionable. State-owned enterprises often prioritize political motives over profitability – a theme evident in the electric vehicle and Trans Mountain decisions. Perhaps the renowned work “How Big Things Get Done” would be more aptly named “How Big Things Get Botched” in Canada.

Ultimately, a nation’s economic vitality hinges on the collective performance of its businesses and people. Investments in underperforming projects yield minimal returns. The consequence of such political spending is reduced productivity and diminished wealth per individual.

Unfortunately, our kids will bear the brunt of these decisions, likely facing a compromised standard of living.

By Ian Madsen

Ian Madsen is the Senior Policy Analyst at the Frontier Centre for Public Policy.

Troy Media

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The Evolution of Amenities in the Office and Industrial Markets

With the increasing push to return to the office, employers and developers, together, are tasked with sweetening the deal for current and future employees…



With the increasing push to return to the office, employers and developers, together, are tasked with sweetening the deal for current and future employees in the office and industrial markets. Makeshift home offices and kitchen counters became the new office during the pandemic, and working from home came with its own set of perks, such as no commute and more flexibility of time. Promises of increased collaboration with the return to in-person work aren’t enough of an incentive. Now, workers across industries expect more when physically in the office.

At NAIOP’s CRE.Converge conference this week, experts explored the range of amenities that developers can consider for emerging building plans or incorporate into already-existing office and industrial spaces. Dawn Riegel, principal, Ware Malcomb, moderated the panel featuring Michael Longo, senior vice president, CBRE; Stacey Mosley, director of research, Brandywine Realty Trust; and Jinger Tapia, vice president, design, Ware Malcomb. 

“We have a labor and employment problem, not a work-from-home problem,” Longo said, citing the ongoing actors’ strike in Hollywood and the U.S.’s ongoing low employment rates. Until the issues of labor and employment are better addressed, Longo said, we should expect to see challenges in the return-to-office movement, but this does not mean developers can’t try to make it as enticing as possible. 

The relationship between attraction and retention, coupled with adopting a holistic view of amenities, was a common theme of the conversation. Developers should consider how well placed and well-positioned their buildings are in a given area, whether in a city or a suburb, and have a good understanding of a company’s culture to know what its employees’ needs are. Data has been collected on workers’ preferred amenities – natural lighting, green spaces, access to parking – but sometimes that data isn’t one-size-fits-all, Riegel said.

We’re in the early days of a massive transition of ownership and assets, Longo believes, noting that capital is tough to access and developers have to be careful about positioning. Financial solvency is key. Building spaces need to be able to take on a new life if a new tenant were to arrive. 

The aesthetics of office styles have rapidly changed over the past three years, Longo said. Office aesthetics have shifted from dropped ceilings and cubicle workspaces to open-concept spaces focused on collaboration. Developers and employers are still figuring out the latest iteration now that workers are returning to the office post-pandemic. 

The low-hanging fruit, as Mosley says, is paying attention to trends in food and furniture. Food delivery service became normalized during the pandemic, and employees want a similar luxury in the office. Mosley offered up some suggestions: coffee carts that swap out employees’ at-home drip coffee for a premium espresso or vending machines with fresh foods like salads. An office space’s furniture should speak to how employees interact with each other and how they work, collaboratively or solo. 

Later, Mosley mentioned enhancing the audiovisual experience for in-person employees to connect with others remotely and on conference calls, and Tapia noted the design transition from giant conference rooms to specially designated “Zoom rooms.” 

The panelists went on to discuss exterior amenities and how cities look at this issue. Mosley noted that exterior improvements can often become amenities for not only those coming into the office but for those in the surrounding community as well. It’s important to leverage the immediate area around your building, whether that be local restaurants or dry cleaners. 

Both Mosley and Tapia stressed the importance of integrating green spaces, such as parks, walking paths, patios and balconies, and sports courts. 

In the past, “amenities were a landscape island in the middle of a parking lot with a concrete bench that the smokers could go to,” Tapia joked. But now, workers of all kinds want connectivity between indoor and outdoor spaces. 

“For the industrial user, it’s about stepping away from the work and providing that connection to nature and a respite from what’s going on in the facility… from a noise standpoint,” Tapia said. As these outdoor amenities are added, requirements from the respective cities must also be taken into account. Tapia said she is taking cues from Mexico’s contained industrial parks to naturally build sustainable initiatives into the design process. This also reflects attention to the evolution of environmental, social and governance (ESG) issues and the need – and demand – for more green spaces.

From the investment perspective, Longo, who specializes in properties across the West Coast, says his current strategy is to assess the land use first and then consider the design and cost because of all the changing attitudes from cities toward new developments and the current declining value of buildings. 

Mosley, whose work is primarily based in Philadelphia, says the growing population in cities has contributed to the success of office and industrial outdoor spaces. She said these spaces should combine both the social and environmental factors. “Let the communities take ownership to catalyze the creativity of the space,” Mosley said, highlighting live concerts, sporting events, and even weddings that have found a venue in these spaces.  

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This post is brought to you by JLL, the social media and conference blog sponsor of NAIOP’s CRE.Converge 2023. Learn more about JLL at or

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Uniting for Progress – the Fifth Annual SYNGAP1 Conference hosted by SynGAP Research Fund (SRF) will take place November 30th in Orlando, Florida. #SyngapConf

Orlando, FL – 19 October 2023 – The Syngap Research Fund (SRF) will host Uniting for Progress — its fifth annual conference on SYNGAP1 research…



Orlando, FL – 19 October 2023 – The Syngap Research Fund (SRF) will host Uniting for Progress — its fifth annual conference on SYNGAP1 research and clinical care on Thursday, November 30 at the Embassy Suites in Orlando, Florida.  Clinicians, researchers, industry professionals and SYNGAP1 families are invited to register at

Credit: SRF

Orlando, FL – 19 October 2023 – The Syngap Research Fund (SRF) will host Uniting for Progress — its fifth annual conference on SYNGAP1 research and clinical care on Thursday, November 30 at the Embassy Suites in Orlando, Florida.  Clinicians, researchers, industry professionals and SYNGAP1 families are invited to register at

“Uniting for Progress will showcase how SRF and the SYNGAP1 community are ready to partner with industry to deliver therapies for patients with this horrible disease.  It is an important opportunity for us to collaboratively improve the lives of people with SYNGAP1” said Mike Graglia, Managing Director of SRF. 

“The SRF annual scientific conference is an excellent opportunity to learn about the latest advances in SYNGAP1 research and to collaborate with other researchers on new projects. I am excited to be a part of this event and to help make a difference in the lives of people with SYNGAP1 Related Disorder,” said Dr. Kim Wiltrout, MD, of Boston Children’s Hospital.

The agenda will feature six sections:

  • New Findings about SYNGAP1
  • Drug Repurposing for SYNGAP1
  • Understanding SYNGAP1 at a Molecular Level – VUS & Missense Variants
  • Updates on Public Preclinical Pipelines
  • Clinical Trial Readiness – Natural History
  • Clinical Trial Readiness – Quantitative Measures

The scientific conference on Thursday will be followed by a family meeting on Friday, December 1, 2023 at the same location. Families are encouraged to attend both days.

“The conference is a pivotal annual event for the SYNGAP1 community. It is an invaluable opportunity to learn about the latest SYNGAP1 research, network with professionals who understand our children, bond with other families, and advocate for our loved ones. Coming together once a year fuels my passion and energy to be part of the SRF team building community and seeking precision therapies for our children,” said Suzanne Jones, parent of a child with SYNGAP1 & SRF Board Chair

We are grateful to our sponsors Stoke Therapeutics, Acadia Pharmaceuticals, Simons Searchlight, Tevard Biosciences, ciitizen/Invitae, Longboard Pharmaceuticals, and Rarebase for their support of this event.  

“Every year this event continues to grow – more families, more researchers, more clinicians – and we couldn’t do it without our sponsors,” said Peter Halliburton, Director of Development for SRF.

Agenda with topics and speakers

  • New Findings
    • New insights in the DEEs, including SYNGAP1 by Prof. Scheffer, AO, MBBS, PhD, University of Melbourne
    • Gene delivery by milk exosomes restores SYNGAP1 expression in mouse brains by Prof. Zempleni, PhD, University of Nebraska
    • SYNGAP1 beyond the Synapse by Dr. Willsey, PhD, University of California, San Francisco
  • Drug Repurposing
    • Moderation by Dr. Xin Tang, PhD, of Boston Children’s Hospital
    • Drug Repurposing Screen in Drosophila by Dr. Chow, PhD, University of Utah
    • Drug Repurposing Screen in Patient Models by Dr. Moxham, PhD, Rarebase, PBC
    • Lessons Learned from Phenylbutyrate Repurposing by Dr. Grinspan, MD, MS, Weill Cornell Medicine
  • Understanding SYNGAP1 at a Molecular Level
    • SynGAP missense: potential druggability and how might we get there by Dr. Courtney, PhD, Turku Bioscience Centre, Finland
    • Modeling the structural effects of SYNGAP1 missense mutations using molecular dynamics simulations by Dr. Postila, PhD, Turku Bioscience Centre, Finland
    • Integrated approaches to resolving SYNGAP1 missense variants of uncertain significance by Dr. Carville, PhD, Northwestern University
    • iPSC models of SYNGAP1 dysfunction by Dr. Coba, PhD, University of Southern California
    • Non-synaptic function of the ASD Associated Gene SYNGAP1 in Cortical Neurogenesis by Dr. Birtele, PhD, University of Southern California
  • Preclinical Pipeline
    • Why SYNGAP1 is an attractive target for Industry by Dr. Mingorance, PhD, Dracaena Consulting
    • TANGO Platform by Dr. Aznarez, PhD, Stoke Therapeutics
    • Praxis ASO Platform by Praxis Precisions Medicine
    • Suppressor tRNAs for the treatment of DEEs by Daniel Fisher, MBA, Tevard Biosciences
  • Clinical Trial Readiness – Natural History
    • Moderation by Dr. Helbig, MD, Children’s Hospital of Philadelphia 
    • A prospective natural history study in SYNGAP1 – first insights from ENDD by Dr. Jillian McKee, MD, Children’s Hospital of Philadelphia
    • Understanding the natural history of SYNGAP1 through data integration by Julie Xian, Children’s Hospital of Philadelphia
    • Outlining the clinical landscape of SYNGAP1 through a computational phenotype approach using 5586 phenotypic annotations in 197 individuals by Dr. Kessler, MD, Children’s Hospital of Philadelphia
    • SYNGAP1 Genotype and Phenotype Analysis by Dr. Kim Wiltrout, MD, Boston Children’s Hospital 
    • Meaningful Clinical Outcomes and Development of a Disease Concept Model by Katharine Cunnane, Weill Cornell Medicine
  • Clinical Trial Readiness – Quantitative Measures
    • Using EEG to understand “how the brain works” in SYNGAP1 by Dr. Levin, MD, Boston Children’s Hospital
    • Deep Learning EEG Biomarkers in SYNGAP1 Rodent Models and Patients by Dr. Gonzalez-Sulser, PhD, University of Edinburgh
    • Validating the ORCA for SYNGAP1 & other DEEs by Dr. Zigler, PhD, Duke University
    • Recent Neurobehavioral Findings in SYNGAP1 by Dr. Frazier, PhD, John Carroll University

About SYNGAP1-related intellectual disability (SRID)

SYNGAP1-related intellectual disability (ICD-10 F78.A1) is a rare genetic disorder caused by variants on the SYNGAP1 gene that reduce SynGAP protein levels. SRF has identified almost over 1,300 patients to date, the number grows weekly.  This protein acts as a regulator in the synapses (where neurons communicate with each other). When SynGAP protein levels are too low, we see an increase in excitability in the synapses making it difficult for neurons to communicate effectively. This leads to many neurological issues seen in SynGAP patients.

Symptoms of SYNGAP1 include: intellectual disability; epilepsy; hypotonia (low muscle tone); gross and fine motor skill delays; autism spectrum disorder; gastro-intestinal disorders; sleep and behavior disorders and visual abnormalities. 

About the SynGAP Research Fund (SRF)

The mission of the SynGAP Research Fund (SRF) is to improve the quality of life for SYNGAP1 patients through the research and development of treatments, therapies and support systems. 

SRF was founded in the US in 2018 as a 501(c)(3) US public charity, and families created sister organizations for SRF in the UK in 2020, in Europe (Netherlands) in 2022, and in Latin America (Colombia) in 2023. 

Completely parent-led, SRF is the largest non-government funder of SynGAP research having committed over $4 million in grants to date. The founders cover all operational costs, ensuring donations fund science. SRF’s grant program awards one or two-year grants to investigators, physician residents, and clinicians who are interested in studying SYNGAP1. SRF grants are intended to help researchers explore novel ideas and answer open questions related to the clinical aspects of and therapies for SRID. 

SRF is a member of the COMBINEDbrain, Global Genes Foundation Alliance, the Everylife Foundation Community Congress, Personalized Medicine Coalition, Rare Epilepsy Network, and the Epilepsy Leadership Council.

For more on SRF, visit: or follow @cureSYNGAP1 on X, LinkedIn, YouTube, Instagram, Facebook or TikTok.

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