"What is the use of living, if it not be to strive for noble causes and to make this muddled world a better place for those who will live in it after we are gone?”
— Winston Churchill (speech in Dundee, 1908)
Cluster Headache is one of the most painful and debilitating conditions known to medical science, yet most people have never even heard of it. It is rare, occurring in about .1% of the population, and as such has very little support for research and development of new medications. In fact, there are no available preventive medications for this disease that strikes down the sufferer multiple times a day. Please help us raise awareness by wearing this t-shirt, donating toward research and awareness efforts, or at least sharing our link. We'll take all the help we can get!
Find us!
Our website: http://chsg.org
Our 2016 Objectives:
- Directly address Medicare coverage of oxygen therapy for cluster headache. Develop a working committee, evaluate approaches, develop a communications plan, crowd-funding and grant funding paths, delivery plan, and resourcing; Begin execution in 2016.
- New research initiatives regarding TRP Channels as new target areas; specifically leveraging biopharm and phase IIB clinical study TRP V1, A1, and M8 antagonists the specifically address hypersensitivity to known triggers for both migraine and cluster headache and related trigeminal autonomic cephalgias.
- Continue to develop and support healthcare and pharma partnerships to engage new research opportunities and initiatives.
- Deliver an easily searchable Cluster Headache FAQ wiki to enable easy access to common questions and answers; include in FB and website; pre-populate with basic content; allow end-users to add content
- Continued Awareness and Advocacy efforts with special focus in partnering with Healthcare and the Biopharma/Pharmaceutical industry as well as major headache research and healthcare centers. Deliver a professional video about Cluster Headache.
- Continued improvements in our web site and social networking presence, especially across multiple devices such as smart phones, tablets, and common computing platforms.
- Patient and Healthcare educational and training materials. Publish “Educational Series” of presentations.
- Double our patient reach in 2016, further reducing the number who currently suffer alone and without current and complete information regarding options, both approved and not yet approved physical and mental health treatments, financial and career support programs, and compassionate support for those in need.
The Business Case for Medicare Support of Oxygen Therapy for Cluster Headache:
Medicare and O2 - A Significant Gap in Patient Care
Our 2015 Objectives:
- Continued research on ketamine infusion therapy with Jefferson Headache Center and potentially 2 more centers, publish outcomes ongoing
- New research initiatives regarding TRP Channels as new target areas; specifically leveraging biopharm and phase IIB clinical study TRP V1, A1, and M8 antagonists the specifically address hypersensitivity to known triggers for both migraine and cluster headache and related trigeminal autonomic cephalgias. These triggers include the perception of moderate temperature and atmospheric pressure changes, noxious chemicals, vallinoid-based scents, and bright light sensitivity. There are several candidates already in the pipeline showing positive results, however, not yet indicated for headache.
- Deliver a Spiral Research Portal focused on ongoing data collection and reporting while also providing helpful data logging and doctor's office patient visit summary reports that will ease consistency in data capture, reporting, and turning anecdotal evidence into an aggregate information database for research and reporting.
- Continued Awareness and Advocacy efforts with special focus in partnering with Healthcare and the Biopharma/Pharmaceutical industry as well as major headache research and healthcare centers.
- Continued improvements in our web site and social networking presence, especially across multiple devices such as smart phones, tablets, and common computing platforms.
- Patient and Healthcare educational and training materials
- Triple our patient reach in 2015, further reducing the number who currently suffer alone and without current and complete information regarding options, both approved and not yet approved physical and mental health treatments, financial and career support programs, and compassionate support for those in need.
Our 2014 Objectives include:
- Continued research on ketamine infusion therapy with Jefferson Headache Center and potentially 2 more centers, publish outcomes ongoing
- Establish a Patient Registry of cluster headache sufferers. This will greatly assist future research.
- Establish Rare Disorder status for cluster headache in the NORD registry (https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/720/viewAbstract)
- Engage directly with the pharmaceutical industry to educate and identify opportunities
- Continued awareness efforts with a focus on expanded public, healthcare, and patient information and tools
- Continued rapid growth in reaching cluster headache sufferers to provide direct support, accurate and trustworthy information, and opportunities to contribute to others
- Continue to provide patient medical supplies, specifically O2PTIMASKS and related materials at a reduced cost to patients
- Extend reach to include educational magazine rack inserts for doctors offices
- Revamp CHSG.org to provide dynamic mobile device support and relevant apps, updated content and research materials, and a new look and feel
This is of course not all we do, but it's the gist of our focus. Indicates that we are ON TARGET in 2014.
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