ALS Care & Support Foundation
(Caring & supporting India’s ALS community since 2015)
Vision
Care, compassion, and a cure for ALS
Mission
To build a compassionate ALS Care and Support family; provide comprehensive knowledge and guidance for effective ALS life management; empower persons with ALS to live with dignity; create awareness; and advocate for affordable treatment, research and cure.
Values
The heartbeat of the ALS family in the country, ALSCAS is guided by the values of humanitarianism, public service, care, compassion, and transparency.
A caring, compassionate and courageous family
We, at the ALS Care & Support (ALCAS) family, genuinely care about persons who have ALS; we empower them and their caregivers with right knowledge needed in this journey. Our platform has a wealth of information and tools to make this journey easier and more manageable. We are committed to providing updated information, from sharing best practices on daily life management based on practical experiences to the latest developments in treatment, therapies and research. But we're more than just a repository of data; we're a community.
Members of ALSCAS are the strong pillars of support for numerous initiatives. Their dedication and commitment have been invaluable in providing care and support to one another, often going beyond their own capacities. In times of crisis or financial difficulties, they have extended a helping hand to those in need, creating a close-knit network of support and compassion.
Further, patients and caregivers actively contribute to initiatives aimed at raising awareness about ALS and advocating for affordable treatment and research.
ALSCAS’s prime focus: Care & support
The raison d'etre of ALCAS is care & support. Be it compassionate counselling, guidance on different therapies, mobility issues, PEG/feeding tube and tracheostomy care, communication solutions, BiPAP and advanced home ICU management, this group contributes significantly to improving the quality of life of people living with ALS (PALS) by sharing the best care protocols.
Organization history
Beginning
The ALS Care & Support movement began as a patient support initiative by two sisters, Satvinder Kaur and Sukhvinder Kaur. Their fight against ALS started in 2008, when their mother Mrs Swaranjit Kaur was diagnosed with ALS. With no support or information available, they researched extensively and learned from various ALS forums worldwide. On their own, they cared for their courageous mother for 11 years (2008-18), including the challenging eight years of providing ventilator support at home.
In 2015, they started penning down these learnings on their website to freely disseminate their knowledge. They also shared an email id for those affected to connect. Determined to build a community where the members genuinely care and support one another, they started the ALS Care & Support WhatsApp group. It has also served the purpose of a forum for effective and seamless knowledge sharing.
Progress
As the word spread through patients and families connected with the ALSCAS group (now a legally registered Foundation), the platform evolved as a pan India 24x7 assistance community.
Key milestones
2015-17
2018-20
2021-23
Accomplishments
Impact
Our ALSCAS community is more than just a patients support group or an organization; we are family. Through in person and virtual meetings, we forge connections and share experiences. Our WhatsApp group is a storehouse of knowledge where we care, support, motivate and encourage one another, exchange experiences and celebrate together. Together, we navigate the challenges of ALS, knowing that in this family, no one is alone.
ALSCAS has today emerged as the united force for care and support, patient advocacy, public awareness, government engagement, research and medical advancement for the ALS community in India.
website: www.alslifemanagement.weebly.com
https://linktr.ee/alscasindia
email : [email protected], [email protected]
Join ALS care & Support Whatsapp family for immediate support (Strictly for PALS and CALS only), please submit google form
https://goo.gl/forms/Py3iQ1hhNNgHttW82
Beginning
The ALS Care & Support movement began as a patient support initiative by two sisters, Satvinder Kaur and Sukhvinder Kaur. Their fight against ALS started in 2008, when their mother Mrs Swaranjit Kaur was diagnosed with ALS. With no support or information available, they researched extensively and learned from various ALS forums worldwide. On their own, they cared for their courageous mother for 11 years (2008-18), including the challenging eight years of providing ventilator support at home.
In 2015, they started penning down these learnings on their website to freely disseminate their knowledge. They also shared an email id for those affected to connect. Determined to build a community where the members genuinely care and support one another, they started the ALS Care & Support WhatsApp group. It has also served the purpose of a forum for effective and seamless knowledge sharing.
Progress
As the word spread through patients and families connected with the ALSCAS group (now a legally registered Foundation), the platform evolved as a pan India 24x7 assistance community.
Key milestones
2015-17
- Starting 2015, duo sisters started building useful content, tips, suggestions and informational procedure videos to take care of ALS life management, purely based on self-learning and past 7+ years’ experience in the ALS journey of their mother.
- In few months when ALS community in India started reaching out slowly, they set-up the foundation of ALSCAS’s WhatsApp group in Oct 2015 to support the people with ALS(PALS) and their caregivers(CALS). Besides 24*7 exchange of messages on issues and suggestions received within the group, frequent detailed phone calls were made to hand hold the PALS and CALS advancing in journey, to discuss and resolve their problems.
- ALSCAS supported members from PAN India since its inception. It is always helpful for community to meet physically and interact. So, ALSCAS convened first Delhi NCR meeting in late 2015. Attended by seven to eight ALS families, it marked a major development in building connections and solidarity.
- Inclusion of ‘Shout-out’ page on the website, highlighting cases of medical negligence observed within the ALS community. The aim was to raise awareness and advocate for improved healthcare services.
- Co-founders were featured in the Limca Book of Records 2016 for ‘home care for amyotrophic lateral sclerosis (ALS)’. The certificate was awarded in March 2022 (deferred).
- By the end of the 2018, the group had grown to 80 patient families.
2018-20
- Despite the personal loss of co-founder’s mother, commitment to supporting ALS families remained unwavering and became more passionate.
- Beginning of 2019, Formalized the process of adding ALS patients and caregivers to the group; a Google form was created to streamline the induction process.
- Additionally, dynamic data analytics charts on ALSCAS website were built, providing valuable insights to the community.
- Connected and joined hands with 'ALS/MND Facebook group', 'MND India' and 'ALS India' for helping the distributed ALS community in India with care and Support of ALSCAS.
- A separate WhatsApp group for Home ICU was formed to separate advanced critical level queries from those recently diagnosed.
- Many senior members in the group got emerged as mentors to new members in the ALSCAS family.
- To respond to repetitive breathing assisting queries and to improve understanding of this issue within the ALS community, a simplified ventilator support document was developed.
- Reached out to doctors and established connections to enhance collaboration and support for ALS patients.
- Also engaged with medical professionals and conducted online zoom sessions to address queries and provide assistance to those seeking information about ALS during the Covid epidemic.
- In this period of Jan2018-Dec 2020, the group had connected another 220+ patient families to this support network of ALSCAS.
2021-23
- Stepped up advocacy efforts and engaged with the Ministry of Health and other policymakers to include ALS in policy discussions.
- Became a registered Patient Advocacy Group (PAG) with the Organization for Rare Diseases India (ORDI) and actively participated in collaborative meetings.
- Significant engagements were initiated with national scientific bodies e.g., IGIB-CSIR, global research scientists, and institutions.
- A newsletter, ‘A ray of hope’ was published to provide regular updates to the community and stakeholders about the latest developments, resources, and advocacy events related to ALS. This has become a regular feature now.
- ALSCAS was formally registered as a non-profit organization under Section 8 of the Company’s Act in Sept 2022.
- Stepped up presence on major social media platforms to share inspiring stories and latest information about ALS.
- The Foundation had the proud privilege to be the voice of the ALS community in India at ‘Nerurons ki Awaaz’, a special session of the 18th Asian Oceanian Congress of Neurology (AOCN) and 29th Annual conference of the Indian Academy of Neurology (IANCON). The forum provided an opportunity to connect with medical professionals, researchers, and experts in the field. It also brought alive what living with ALS means. ALSCAS's caregivers shared their personal journeys – the emotions, the day to challenges, the innovations of CALS to make the life of PALS more comfortable, and above all the triumph of hope over despair.
- ALSCAS attended various conferences, workshops, and events on rare diseases and disabilities, advocating for ALS and reinforcing its position as the prominent voice of the community.
- ALSCAS was invited to participate in a IFRCON Neurorehabilitation conference at Mumbai as part of ALS disease panel at a public forum session.
- ALSCAS was invited to participate in a IFRCON Neurorehabilitation conference at Mumbai as a member of medical panel at ALS focused session and later ALSCAS presented as voice of ALS Community at the public forum session.
- Participated in the national TV program DD-News 'Total Health’ to create awareness about ALS in the country.
- Initiated discussions with IBHAS for neurorehabilitation services for ALS.
- ALSCAS is delighted to welcome John Abraham as its goodwill ambassador in this year.
Accomplishments
- Reached 550+ affected people, ALSACS is a rapidly growing group (111+ added in 2022).
- Set-up framework of state-wise chapters for localised support.
- Guided 250+ affected families to handle critical emergencies effectively (122+ in 2022).
- Over 150K WhatsApp interactions on challenges/solutions for ALS (30K in 2022).
- Conducted over 40+ expert informative and interactive sessions (16+ in 2022).
- To bring alive the journey of people living with ALS, a movie, ‘Dear Zindagi’ was put together. Inspiring, informative and poignant, the video is a depiction of ALS Journey phases through a compilation of photographs and videos of the ALS warriors of ALSCAS India along with sharing knowledge about ALS disease and community’s goals going forward.
- In addition, another a documentary video, ‘Life is a hope’ was produced to showcase how the ALS community is supporting each other. It also highlights how the day-to-day challenges are being overcome through love, care and compassion.
- Co-founders featured in the Limca Book of Records 2016 and awarded the certificate in March 2022 (deferred) for ‘home care for amyotrophic lateral sclerosis (ALS)’.
- Contributed to the ALS awareness in India through national TV program DD-News ‘Total Health’ in February 2023.
- ALSCAS has received the "NeuroRehab Initiative of the Year 2023" award from the Indian Academy of Neurology (IAN). This recognition underscores their outstanding efforts in neurorehabilitation for ALS/MND patients and highlights their dedication to improving care and support in India. It is a significant honor that brings attention to their valuable work in the field.
- Besides the connects through whatsapp, calls and zoom online meetings, ALSCAS members kept visiting to fellow community members whenever possible. This helped to form deep connections and genuine bonds among our ALS family which reinforce that “we are not alone in this journey”, there are others who are with us who genuinely care. (One important point picked up from newsletter.
- Financially supported a number of patients in need of critical equipment.
Impact
Our ALSCAS community is more than just a patients support group or an organization; we are family. Through in person and virtual meetings, we forge connections and share experiences. Our WhatsApp group is a storehouse of knowledge where we care, support, motivate and encourage one another, exchange experiences and celebrate together. Together, we navigate the challenges of ALS, knowing that in this family, no one is alone.
ALSCAS has today emerged as the united force for care and support, patient advocacy, public awareness, government engagement, research and medical advancement for the ALS community in India.
website: www.alslifemanagement.weebly.com
https://linktr.ee/alscasindia
email : [email protected], [email protected]
Join ALS care & Support Whatsapp family for immediate support (Strictly for PALS and CALS only), please submit google form
https://goo.gl/forms/Py3iQ1hhNNgHttW82