Picture your toddler, a developing, vibrant, and loving child. Now imagine that the child suddenly begins to have uncontrolled seizures. After myriad tests the doctors cannot tell you why the seizures are occurring, or why the medications are not stopping them. Your once vivacious child spirals into hundreds of seizures per day and their development begins to regress. Your family’s life is turned upside down, you or your spouse will have to quit work, the medical bills are mounting, and how will you pay for that flight-for-life trip? You feel lost and alone.
Families that have a child with Doose Syndrome can live that exact scenario.
The Doose Alliance was initially formed in 2002 by parents of children diagnosed with Myoclonic Astatic Epilepsy (commonly referred to as Doose Syndrome). These parents had met and corresponded through a Yahoo group formed back in 2002 as support for families with children diagnosed with this condition. Although we started with just 5 members our numbers have now swelled to over 500 from all around the world.
As "Team Doose" we had the largest team at the National Epilepsy Walk in Washington in this year. Dr Hermann Doose (who first introduced the world to the Doose diagnosis back in 1970) joined our team as a virtual walker along with German Epilepsy Centers. At the Epilepsy Walk, we raised $25,000 for the Epilepsy Foundation, the second largest amount by any group involved. While we are proud of this achievement, we are now focused specifically on helping and curing children with Doose Syndrome - and aiding families (around the world) of those kids.
Our determination was the impetus for the creation of the Doose Syndrome Epilepsy Alliance, a new non-profit organization. The Doose Alliance will coordinate aid for families in both diagnosis and treatment of Myoclonic Astatic Epilepsy, similar to the work of the Dravet Foundation and LGS Foundation. While awareness and aid are worthy goals, furthering research for Doose Syndrome is our ultimate goal. We not only want better treatment options for our children, but we also want their quality of life to be drastically improved. And of course we want an actual cure for Doose Syndrome, and will not rest until we have achieved that goal.
Currently, the Doose diagnosis has been accepted by leading hospitals world-wide. However, many hospitals and doctors remain unfamiliar with it and thus do not appropriately or effectively treat children inflicted with Doose Syndrome.
Briefly, the current objectives of the Doose Alliance are:
1. Obtain and translate all of the data and research performed by Dr Doose. He has already committed to help in this regard and we both feel that this is a critical step to aiding the universal understanding of this syndrome. (Note that we both believe that there currently exists a plethora of misdiagnosed cases).
2. Construct a global data base. This will contain relevant medical information (including success rates of various treatments, VEEGs to compare and contrast, etc), which will naturally lead to quicker diagnoses and effective treatment of Doose children worldwide. Many parents have noticed that as soon as their children have been correctly diagnosed with Doose, their treatment immediately minimizes further physical and cognitive impairments.
Our large global parent support group has long recognized the huge potential of our existing collective information, but we must formalize and coordinate the recording of our 'anecdotal' experiences and let medical professionals interpret and dissect such information.
3. Fund research. We will meet directly with neurologists involved in the genetics field pertaining to Doose. We will be aiming high in this area, as we know it is of significant importance.
4. Financial Grants. We will bestow grants to needy families to help with care (e.g., emfit monitor, equipment, and travel).
5. Increase awareness. Online forums and networking, conferences, virtual conferences, social media, medical journals, National Epilepsy Walk, TV news magazines, “health columns” in print magazines, Dr. OZ and the like (We can have big, hairy, audacious goals!) We currently have organized a grassroots effort to Turn the White House Purple for Epilepsy. We have over half a million page views a month and over 6200 members there.
The Epilepsy Foundation of America says, “We are delighted to be working with the campaign “Turn the White House Purple for Epilepsy” because there NEEDS to be more awareness for epilepsy so that not another moment is lost to seizures. We hope to see a “Purple House” in Washington, D.C. Very soon!”
CURE (Citizens United for Research in Epilepsy) says, “So happy to be working together to raise epilepsy awareness! Together we will ensure a future without epilepsy!”
We are inviting doctors from around the world to take an active interest in our alliance, formally on our medical panel, and at least one will be on our non-profit board of directors. We need doctors to help house the genetic information, conduct research, and communicate their specific expertise in the area. We plan to arrange gatherings of 'Doose minds' in conjunction with other global conferences on pediatric neurological matters, or we may consider sponsoring a targeted Doose conference. We want to open the lines of communication across the world to give our kids the best possible opportunities.
We are motivated, we know where we want to go next, and we would be honored if you would join us in our journey.