Community Pages 2017

I last posted a list of on-line community pages in 2011, and there have been a few more appearing since then (either because they are new or because I didn't find them last time!). This list focuses on pages where you can find others with HSP and meet/chat/ask questions (etc.).  I would welcome comments with links to any other community pages.

Facebook:

The UK group: https://www.facebook.com/groups/19469684343/
The Australia group: http://www.facebook.com/pages/HSP-Research-Foundation/137857172915152
The USA group: https://www.facebook.com/groups/12339208066/
Euro HSP: https://www.facebook.com/groups/eurohsp/
The Spanish group: https://www.facebook.com/groups/49797425583/
The Italian group: https://www.facebook.com/groups/317582312142/
Swedish: https://www.facebook.com/groups/238578376197139/
Portuguese: https://www.facebook.com/Paraparésia-Espástica-Familiar-Ramo-Doenças-Raras-124536010894360/
French: https://www.facebook.com/paraplegiespastique/
Danish: https://www.facebook.com/scahsp/
Greek: https://www.facebook.com/hereditaryspasticparaplegia.gr/
Another English: https://www.facebook.com/groups/125580470865793/
Another English: https://www.facebook.com/groups/56874131931/
Another English: https://www.facebook.com/groups/HSP.info/
Another English: http://www.facebook.com/pages/Hereditary-Spastic-Paraplegia-HSP/121279057942990

Medical/patient community pages:

Rare Connect: https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia
Patients Like Me: http://www.patientslikeme.com/conditions/493-hereditary-spastic-paraplegia

Information: 

There are plenty of places to get information about HSP. Here are a few interesting places:

• This Facebook group https://www.facebook.com/groups/1480906428886694/ reports all sort of interesting things.
• The Spatax network: https://www.facebook.com/SPATAX-186083254777101/
• Tom Wahlig (in German) https://www.facebook.com/Tom-Wahlig-Stiftung-110782708979263/  
• This community for researchers (& crowd funding) http://react-community.org/diseases/606 its a bit empty at the moment, but you could sign up and help raise awareness!

I began this post by copying the previous set of links and checking them all. I deleted those that either don't exist any more, or haven't been updated for a good few years.

I have added various pages that I've found in recent years. Its interesting to note that there don't appear to be any groups/pages from Asia, Africa or South America (perhaps except the Portuguese page). Perhaps there is a cultural difference, or its a language barrier.

News and Research Stories (Mar 2017)

Various stories and findings around at the moment which might be of interest.

Planning for clinical trials for HSP drug

Researchers in Australia are currently planning to start clinical trials for the candidate drug Noscapine, based on its effectiveness on HSP stem cells, safety data, toxicology data, patent status, availability, and future affordability to HSPers.

Preliminary discussions have also been held about implementing early stage trials. Funding of the overall process through has been discussed, investigation is now needed to ensure the best decisions are made over time in the interests of establishing an effective treatment that is widely available and affordable to HSPers globally.
https://hspersunite.org.au/hsp-research-program-update-march-2017/
https://hspersunite.org.au/promising-hsp-drugs-identified/

Oxybutynin link to dementia

It has been reported that there is a link between Oxybutynin and dementia. Oxybutynin is one of the common over-active-bladder medications. Readers who take bladder medication may wish to check of oxybutynin is their active ingredient and perhaps discuss with their doctor.
https://www.sciencedaily.com/releases/2017/03/170327083445.htm

Neurological conditions have impaired swallowing

This story caught my attention as various people with HSP have mentioned having difficulty swallowing. With impaired swallowing people are unable to protect their lungs in the way that a healthy person can, at risk for inhaling food and saliva into the lungs with various health consequences. Others may have impaired coughing or breathing. This reports that risk of swallowing difficulties can be predicted by weak cough for people with Parkinsons. A number of therapies are being developed.
https://theconversation.com/a-serious-and-often-overlooked-issue-for-patients-with-brain-diseases-swallowing-67042

Gut bacteria research looking at slowing down Motor Neurone Disease

Researchers from the Leonard Wolfson Experimental Neurology Centre (LWENC) have been awarded a grant to investigate how changes in gut bacteria could slow the progression of neurodegenerative disorders such as Motor Neurone Disease (MND). They will assess whether changes in gut microbiota (gut flora/bacteria) can influence cells in the brain that control inflammation and appear to be central in MND and other diseases like Alzheimer’s.  The team believes the cells may be able to slow progression. HSP is a motor neurone disease. Results due 2021
http://www.uclh.nhs.uk/News/Pages/ChangestogutbacteriacouldholdkeytoslowingdownMotorNeuroneDisease.aspx

Shared genetic origin for ALS/MND and schizophrenia

Researchers have shown that Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease (MND) and schizophrenia have a shared genetic origin. ALS/MND is not just a disorder of individual nerve cells, but a disorder of the way these nerve cells talk to one another as part of a larger network. So ALS/MND could be considered in the same way that we think about schizophrenia - a problem of disruptions in connectivity between different regions of the brain, and perhaps look for drugs to help stabilize the failing brain networks. There are similarities between ALS and HSP, so this might be relevant.

https://www.eurekalert.org/pub_releases/2017-03/tcd-sds032417.php