12 months ago, if I heard the word epilepsy, it meant I was at an amusement park or a concert venue; somewhere where strobe lights could induce a rare seizure. Today, I hear the alarm twice a day to remind my mother to take her medicine, and to remind my whole family that one missed dosage could mean a thirty second episode, or days of fear at the hospital. Epilepsy affects more than 2 million people in the United States and 65 million people worldwide. This year, another 150,000 people in our country will be diagnosed with epilepsy. Despite all available treatments, four out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control.
On August 23rd 2014, my mom had her first grand mal seizure (we later found out she likely had had absence seizures as a child) We still don’t know what caused the seizures (as most people don’t), but we do remember exactly when it started. My mom was driving us to dinner and suddenly stopped answering my questions; she claimed she was “tired.” I was annoyed, as I thought she was pouting because I said something that irrationally offended her. But when she still wasn’t talking through an hour-long dinner, we knew something was up. I drove home, and my mom immediately got into bed.
An hour later, I heard the loudest scream I’ve ever heard in my life. I’ve heard the phrase “screamed bloody murder,” but I never truly understood what it meant until I heard that scream. It’s impossible to describe, but my sister and I, from separate rooms ran up to see my mom seizing. It was exactly what you picture: convulsing, foaming at the mouth, etc. Elizabeth called 911 and I put my mom on her side (a trick we all learned in our college days). She was bleeding from her mouth because her jaw had locked on her tongue.
My mom was taken to the hospital and released the next morning. We were very lucky, and still are. There are over 15 medications on the market that are used to treat epilepsy, and there is very little research out there to figure out which medicines work for which cases. While the first medicine left my mom depressed, and a second (and third) seizure ensued when she switched, the second medication has left my mom stable for close to a year.
Unfortunately, others aren’t as lucky. On October 11th, 2015, my mom will celebrate being one year seizure free, but, like I said above, four out of ten people with epilepsy continue to experience uncontrolled seizures, ranging from babies to the elderly. Please read some of the other stories from my teammates that are running this marathon. These people are literally amazing and even further emphasize how blessed my family and I are that we have this thing under control.
I have also included some information below about the Epilepsy Foundation and their initiatives that would be supported by your donation. Thank you so much for reading. Any and all support (monetary or otherwise) is so appreciated. Thanks!
Strategies, Objectives and Priority Activities
This strategic plan is centered on implementing interdependent strategies. Each has overarching objectives, which will move forward the mission of the Epilepsy Foundation and will be strategically implemented throughout the Epilepsy Foundation network. Progress on the objectives will be measured and achieved through priority activities. In every aspect of our plan and activities, we will seek opportunities to build and enhance partnerships with other organizations that share our core values and our fundamental goal of improving the lives of people and families living with epilepsy.
Strategy 1: Accelerate Innovative Therapies and Research
Strategic Objective: Measurably increase support for innovative therapies and research to eliminate seizures, side effects, epilepsy-related mortality, co-morbidities and other consequences of epilepsy; address gaps in the research, commercialization, and implementation continuum.
Increase the absolute and relative contribution to support innovative research and new therapies.
Encourage scientists and clinicians to devote their careers to epilepsy research and clinical care through financial and other forms of support.
Accelerate research and the commercialization of new therapies for epilepsy through grants, investments and innovative partnerships and platforms, including the development of a clinical trials consortium and a pipeline conference that brings together leaders from all areas of new therapy development.
Undertake advocacy to support regulatory processes and to remove barriers imposed by systems of healthcare and insurance programs in order to promote speedier access to all available therapies, including recently approved treatments.
Support the use and development of evidence based, self-management therapeutic approaches including dietary therapy, exercise, stress management, and other areas of seizure and quality-of-life management, especially when commercial incentives may not suffice to make such approaches widely available.
Strategy 2: Empower Individuals and Families through Education, Awareness and Community Services and Support
A. Strategic Objective: Education
Provide comprehensive information on epilepsy, available therapies, providers and services to individuals, families and healthcare professionals online and in local communities.
Enhance our digital platform including online web, mobile and social media resources and tools to increase reach and educate targeted audiences.
Build partnerships with professional organizations and publications to foster the exchange of relevant and cutting edge information.
Build outreach of Epilepsy Foundation resources with the professional community (including epileptologists, neurologists, nurse practitioners, allied health professionals, and pediatricians).
Promote and increase the reach and utilization of our 24 hour, nationwide support resource.
Ensure consistency and accuracy of information throughout the network and epilepsy community.
B. Strategic Objective: Awareness
Increase awareness of epilepsy and of the Epilepsy Foundation among the general public and individuals and families living with epilepsy.
Develop comprehensive public awareness campaigns and messaging to elevate the visibility of epilepsy and the Epilepsy Foundation mission and vision.
Raise awareness of the mortality in epilepsy for people and families affected.
Review the Foundation’s brand, key messaging and name to reflect the Foundation’s focus on accelerating change on behalf of people with epilepsy.
Expand the outreach and awareness of the Foundation’s education, advocacy and support services to increase the number of people served across the nation.
Build awareness of all available epilepsy pharmaceuticals, devices, dietary and diagnostic therapies to individuals, families and medical professionals.
C. Strategic Objective: Services and Support
Provide support services and promote opportunities to build communities and exchange knowledge and experience nationwide, online and through local activities and partnerships.
Establish coordinated nationwide and state policy priorities and mobilize advocates regarding public health, access to care and regulatory issues pertaining to epilepsy.
Create structures through which individuals can come together to raise awareness, raise funds and provide mentoring and other services in the community.
Provide local and online support to bereaved families.
Expand the availability of legal resources to support people living with epilepsy.
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