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Ten Years of the LGS Foundation

November 30, 2017

 

Today is November 29th, 2017 and it's hard to believe that it's the tenth anniversary of the LGS Foundation. It is also my younger brother Michael's birthday. Michael has been living with LGS for 27 years, and as we all know, LGS is a very tough road to travel. It seems like just yesterday when my family and I were sitting around the kitchen table for cake on his 20th birthday when I made an announcement that I was planning to start a foundation for Lennox-Gastaut Syndrome. Given that today is the LGSF's ten year anniversary and Michael's 30 birthday, I thought it would be appropriate to reminisce about what the LGSF has accomplished over the past decade. 

 

Prior to November 29th, 2007, there had never been a formal organization for LGS. There were few places to turn for interpersonal support, and certainly no central foundation that brought LGS families together, provided resources, or funded research specifically in LGS. 

 

The idea to start the LGSF was somewhat sudden. At the time, I was working in the television industry (my previous career was in television production) and I had dreamed of producing a documentary on LGS for years. I always knew that LGS was under-recognized and certainly under-funded, but it wasn't until I began pre-production research on the LGS community that I realized just how under-represented the community actually was. So, I purchased the lgsfoundation.org domain and got to work trying to find other families through social media. But keep in mind, this was 2007, way before the popularity of facebook and twitter, so I turned to myspace (remember myspace?!) and was able to connect with other families that way. Slowly, the website traffic grew and before we knew it, we were planning events and support groups with other LGS families around the country. 

 

LGSF EVENTS:

One of the first events LGSF organized was a meet and greet for LGS families who were attending the National Walk for Epilepsy in DC. The photo to the left is the very first walk we attended; there were only seven of us on Team LGSF in 2008. Now, we consistently have a team of 100+ each year.  The photo underneath is from just a few years later (2011). You can see how much we grew!

 

The walk in DC isn't the only event we participate in. In 2016, we launched our own national walk for Lennox-Gastaut Syndrome called the Walk n' Wheel. This event takes place every Winter/Spring in Orlando, FL. Other events that we host include educational conferences, LGS awareness day events, and support groups. More details on these events are below.  

 

LGSF SUPPORT:

By 2010, the LGSF had organized a number of regional support groups across the United States. This was one of our first big programs. The in-person family to family support was incredibly well received, as many of the families who attended were able to meet other families for the first time.   This photo was taken in 2010 at the first regional group in Southern California, but many other groups have been organized across the U.S.A. I am still in touch with  the families in this photo and call all of them friends. Our most popular support tool is through facebook, where we have a closed group with 4,000 members around the world. The conversations and support in the group have been incredible over the years. 

 

LGSF CONFERENCES:

 

In 2011, we held our first national conference on LGS in Arlington, VA. I was nervous about organizing this; I wasn't sure if it would be well attended and whether or not the families would find it meaningful, but I certainly hoped so. Thankfully, it turned out to be a big success! 70 families from across the United States traveled into the DC area for the first conference, which back then,  was only two days long. Fast forward to 2017; this year, we hosted our first conference outside of the U.S. in the United Kingdom and just a couple of weeks ago, we held our fifth international conference. This meeting brought together 325 LGS family members and epilepsy professionals. And in case you've missed it, slides and photos are now available from the last three conferences through our website. 

 

                                                    PHOTO ABOVE: 2011 CONFERENCE

                                                   PHOTO BELOW: 2017 CONFERENCE 

 

RESEARCH:

 

In 2013, we launched our research grant program to help drive and accelerate research in LGS. In 2014, we helped launch the Rare Epilepsy Network (REN) in an effort to understand common issues across the rare epilepsies. This was a partnership with other rare epilepsy groups and the Epilepsy Foundation.  In 2017, we launched the  LEEP program (LGS / EGI Exome Project), which helps families receive free genetic testing, specifically whole exome sequencing, to understand the genetic causes behind their loved one's LGS. You can read more about our research programs here. To date, we've enrolled more than a hundred families in REN, dozens of LGS families in LEEP and have funded a variety of basic science and clinical research grants in Lennox-Gastaut Syndrome. Grantees of our program have gone on to receive even larger grants from institutions like the NIH and those grantees have even gotten their colleagues interested in LGS research. It's really pretty amazing to see how more and more researchers are becoming interested in helping our loved ones by finding causes, treatments, and ultimately a cure. The photo on the right is of Brian Grone, PhD (2014 recipient) and Bobby Hunt, PhD (2015 recipient) with their advisor Scott Baraban, PhD at the 2014 LGS day awareness event in San Francisco. 

 

Speaking of which, LGS awareness day takes place on November 1st every year, which is also the first day of epilepsy awareness month. Over the past five years (since we launched LGS day), dozens of awareness events have been organized across the United States, and the world. One of my favorites has been the illumination of Niagara Falls in either green or purple or a mix of both (sage green is the LGS awareness color and purple is the color for epilepsy awareness). Recently, we launched a new initiative called "illuminate for LGS" where LGS families request the illumination of monuments or buildings in LGS awareness colors as a way to raise awareness.  Monuments such as the St. Louis Planetarium, the Peace Bridge connecting the USA to Canada, the Lowry Ave bridge in Minneapolis, and other spaces have been illuminated in purple and green.

 

Two final programs that I can't forget to mention are our patient assistance program and our wish granting mechanism to Give Kids the World. These programs have been called "life changing" by families in many different ways. Read all about them here: www.lgsfoundation.org/programs.

 

It's been an amazing 10 years meeting hundreds of new families and learning from every one of them. You know the saying, "it takes a village" - and I can certainly attest to this. Without the support of LGS families, our board of directors, our staff members, professional advisory board members, donors, volunteers, ambassadors, etc., we wouldn't be where we are today. On another note, I'd also like to personally thank my family and friends who have supported me tremendously over the years. 

 

I won't ever stop fighting to improve the lives of our loved ones with LGS. I can't wait to see where we are and the progress that we will make in another ten years from now.

 

Thanks for reading,

Christina SanInocencio

 

I dedicate this blog to Michael, my inspiration for starting the LGSF.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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