– exclusive report by our CEO, Rod Harris
In December 2018, I attended meetings of the International Alliance of ALS/MND Associations, the Allied Professionals Forum and the International Symposium on ALS/ MND.
At the Alliance meeting, we heard about the work done over the past year by the Alliance, growth in membership, new staffing, grants for members to attend the meeting, elected new Board members and a new Chair. It has been a successful year, with increased funding from sponsorship reducing the cost of the Alliance operations.
Presentations were made on a range of topics, including advocacy, support for people with MND, partnership activities, stakeholder engagement and organisational development. A strategic planning exercise provided excellent information, and suggestions for the coming year, and a new strategic plan will be developed.
Dr David Taylor (ALS Canada) gave an entertaining and comprehensive presentation regarding the state of research, especially focussing on genetics and drug trials. He highlighted that we know more genes and have more targets for ALS treatments than ever before, and more drugs in phase 1 trials. David’s presentation is available at https://bit.ly/2RIKM5k
MND Australia presented an invitation to attend the next meeting in Perth, WA in 2019.
The 'Ask the Experts' was an excellent presentation, largely mirroring the presentations at MND Connect and our own 'Ask the Experts' sessions. The big learning experience for Perth was the use of live streaming of the session via Facebook. I watched from my hotel room!
The Allied Professionals Forum was again a highlight. Sixteen excellent presentations covering a wide range of topics aimed to give take-home tools and ideas for allied health professionals to trial and implement. Topics included information provision, respiratory support, children's services and NIV. Bereavement support presented a series of challenges, including who should take responsibility for this much needed support.
Sexuality and intimacy finally made the stage, with a very sensitive presentation regarding discussion during MND. Music and Art therapy were discussed as rehabilitation in both group and individual modes. And the use of cannabis extract was presented, highlighting some of the early benefits found in ALS/ MND.
A newly created award, recognising a person who had made a significant contribution locally, nationally and internationally to allied health and people with ALS/ MND was awarded to Dr Sara Feldman, ALS Hope Foundation.
The International Symposium on ALS/MND is presented in two streams, science and clinical, with research focussed presentations across a range of themes. The role of environmental factors, metabolism, and physical fitness continue to be areas of interest in identifying who is at risk of developing ALS/MND.
It is also known that significant numbers of people, even without a family history, may carry detectable genetic variants which may cause or contribute to their diagnosis and condition. Presentations looked at how we can support people in making informed choices about genetic testing where specific therapies are beginning to emerge and be developed.
The role of different neuronal compartments, axons and synapses in ALS/MND continue to be examined to understand disease onset and progression. Advances in single cell biology show promise to raise knowledge to new levels where precise events which trigger ALS/ MND can be seen.
Disease progression, including cognitive change and its impact on quality of life was discussed as critical to care planning and individual autonomy, and informing clinical trial design. (adapted from the Symposium Programme Forward, by Kevin Talbot) We learned also about improvements in care of the disease. The one care improvement I found most interesting was in respiratory care. If we exercise the breathing muscles for expiration (breathing out), we can improve strength which leads to improved volume of speech and ability to cough up secretions. We also learned about our microbiome. This is the bacteria in our gut that may set up an inflammatory cascade and influence the development of neurodegenerative diseases like ALS/MND.
Some of the most exciting developments are the recently initiated and soon to be started trials in genetic forms of the disease. This is exciting because, for the first time, we are applying specific treatments for the type of ALS someone has. In the case of SOD1 based ALS and C9ORF72 based disease; the strategies will block abnormal protein from being produced.
We also heard about new and ongoing trials for ALS that are not related to the genetic variants specifically. We have treatments that are directed at respiratory muscle strength (reldesemtiv and levosimendan), anti-inflammatory medications (Acthar, Tocilizumab), drugs that modify excitability of neurones (Retigabine), and drugs that modify oxidative stress by altering SOD activity (CuASTM) among others.
Please note that these trials may not be available in Australia. (adapted from the ALS Hope newsletter, Dr Terry Heiman-Patterson)
My most important take home messages are that great steps are being made in identification of cause, development of treatments, and progress towards finding interventions. The meetings highlighted the importance of the global fight against ALS/MND, and the parts that many players have in this work. Attendance reaffirmed the quality and effectiveness of the services we provide to support people living with MND. It also underscored that until there is a cure, there is care!