We recently announced that following the success of our first virtual International Symposium on ALS/MND (the largest medical and scientific conference specific to MND/ALS) last year and the ongoing challenges caused by the global pandemic, the MND Association’s 32nd Symposium in December 2021 will be held online. As we head towards our Symposium this year, let’s hear about the experiences from one of our international friends in the MND community, Silverio Conte, Chief of International Relations at Associazione conSLAncio Onlus.
What is Associazione conSLAncio Onlus?
Associazione conSLAncio Onlus became the first Italian, patient led, ALS Association to present a scientific poster at the 31st International Symposium on ALS/MND and presentation at the 2020 Annual Meeting of the International Alliance of ALS/MND Associations.
Founded by Andrea Zicchieri after his ALS diagnosis in 2013, conSLAncio is an all-volunteer, multidisciplinary Italian ALS Association. Zicchieri is the first Italian to receive edaravone after it was approved in Japan. Among many unique facets, conSLAncio is Italy’s first ALS association with an office abroad established in Boston, Massachusetts since 2017. conSLAncio develops new initiatives to not only help the Italian community but adds a new dynamic to the global effort to end ALS.
conSLAncio works continuously to improve assistance for ALS patients and families throughout Italy and engages with the international scientific community to assess developmental therapies and accelerate the approval process. The organisation also informs the Italian community of the latest research information and current clinical trials being conducted worldwide.
What did you present?
The poster, “Using a Design-Build Approach to Improve International ALS Research News Access in Italy” (CMS-27) presented conSLAncio’s innovative interdisciplinary project delivery system . The objective of this work is to improve accessibility of real-time online national and international scientific ALS research news in Italy. Information access is a challenging endeavour for patients, families, and caregivers in non-English speaking countries.
Typically used in the civil construction industry, Design-Build is a project delivery system in which a single entity oversees and executes a project from design to completion. In this project, the Italian ALS community provided critical input and was involved throughout. As time, funding, and quality results are critical variables for the ALS community, conSLAncio’s Design-Build engineering incorporates extensive concentration on initiative failure prevention. Preventing an initiative from failing in advance greatly reduces the necessity for reconstruction and allows efforts to be applied towards new useful projects. Design-Build ensures quality performance which can save time and money compared to outsourcing the work. Using Design-Build, conSLAncio made four new resources of ALS research news.
- Easy to use multi-lingual website
- Italy’s First LIVE ALS Clinical Trial Database
- conSLAncio Caregiver Training Course Series (in person and online), Italy’s first free online caregiver course for fragile and complex patients covering 14 themes
- ALSUntangled in Italian for the first time
- A guide to edaravone in Italy
- Message Banking™: Voice Banking and Double Dipping – Introduction  and Process  Literature on the Italian language augmentative communication technology, to allow a patient to record their personal natural voice for use with all communication devices.
- Annual ALS Things to Follow Summary
- The Motor Neurone Disease Association Research Monthly in Italian
- ALS Therapy Development Institute Research News
- Daily international research news on Facebook and Twitter
The Design-Build approach has proven beneficial in improving access to timely national and international ALS research news for conSLAncio. Preliminary data show a 96% increase of member interactions in Italy and abroad during January to September 2020. The resources presented here were constructed within a two-year period. conSLAncio will continue to develop new projects using Design-Build in response to the Italian ALS community’s input. Additional national and international collaborations for up-to-date information will also be sought.
Preparing our poster and ‘lightning explainer’ video took months of preparations that featured extraordinary remote global team work. The Live Poster Presentation at the Virtual Symposium was an intriguing experience like no other, especially not being able to physically see the audience and the many surprise visitors that tuned in.
Watch Silverio’s poster ‘lightning explainer’ video which summarises the work in 3 minutes:
What did you get out of the Symposium?
The 2020 Virtual Symposium and Alliance Meeting were tremendous experiences for conSLAncio as we enjoyed viewing many exciting studies and initiatives that we look forward to learning more about in the near future. It was inspirational to meet several delegates, patients, and families from all over the world through each poster session and speed networking sessions. The Virtual platform enabled exploring posters and platform sessions at a relaxed pace for two months which normally isn’t possible. We also made several new friendships and we’ve already begun working together. The Symposium and Alliance Meetings are events we look forward to annually and highly encourage participation as a presenter or guest.
conSLAncio is delighted to collaborate with many organisations, including the MND Association. The MND Association does remarkable work in sharing well-rounded international community news through the MND Research Monthly newsletter. Since 2019, conSLAncio and the MND Association have been working together to produce the MND Research Monthly in Italian for the first time.
We express our most sincere gratitude to the dedicated patients, families, caregivers, volunteers from the Italian community, and our partners worldwide for their support.
- Zicchieri, A.D., Conte, S.F., De Rossi, N. (2020). CMS-27: Using a Design-Build Approach to Improve International ALS Research News Access in Italy. Poster presented at the Motor Neurone Disease Association Virtual 31st International Symposium on ALS/MND.
- Message Banking™: Introduction Literature in Italian (Comunicare n.39 (dicembre 2019) – Semestrale della Fondazione e del Centro Bendetta D’Intino Onlus
- Message Banking™: Process Literature in Italian (Comunicare n.39 (dicembre 2019) – Semestrale della Fondazione e del Centro Bendetta D’Intino Onlus
We’d like to share our thanks to Silverio for sharing his experience of the Symposium and the Associazione conSLAncio Onlus with us.