Monika Osmianskiene, Lithuanian MP for Muscular Dystrophy
【Turning Atrophy into the Voice of the People. Challenging Extreme Public Welfare】
I cherish every day!
 Every life journey teaches me to overcome shame and fear, to be confident in myself, and to live with boundless hope. — Monika Osmianskiene

 
 
As long as I can breathe, there is hope.
 
A parliamentarian who never gives up on life!
 
A parliamentarian whose service never closes!
 
With perseverance as hard as stone, dancing alongside public welfare governance.
 
She is Monika Osmianskiene, Lithuanian MP for Muscular Dystrophy!
She tirelessly works to restore the dignity of people with disabilities, touching all parliamentarians. Together, without distinction, they prioritize legislation for persons with disabilities to implement the spirit of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) — promoting diverse participation and respecting autonomy.

Respect others, respect the decisions they make for themselves.
Without our involvement, don't make decisions for us!
The government team established the Rights Protection Promotion Task Force for People with Disabilities and the Accessibility Review Task Force to track and improve the suggestions made by people with disabilities.
Regularly hold liaison meetings with disability groups to understand their stances and respect their intentions.
 
No discrimination
Eliminate stereotypes and create a friendly Lithuania.
Sign the "Low Vision Barrier-Free Home Declaration" to focus on accessible spaces for all types of people with disabilities.
Collaborate with the Muscular Dystrophy Association to organize an epilepsy youth summit and produce educational short films on muscular dystrophy, providing friendly support to related vulnerable groups.
 
Full integration into society
Widely establish community-based service resources for people with disabilities to realize community living.
Expand day work facilities for people with disabilities.
Set up community-based day care services, family care points, community residences, and mental disability clubs.
 
Respecting everyone's differences and accepting people with disabilities is a form of human diversity.
Promote various welfare services to meet the different needs of people with disabilities.
Respond to International Day of Persons with Disabilities on December 3 by organizing various advocacy and inclusive activities.
Promote diverse services such as sign language interpretation, real-time transcription, visual impairment rehabilitation, independent living, and fitness centers.
 
Equal opportunities
Barrier-free communication, implement information equality.
Train easy-to-read quality inspectors to review and publish multiple easy-to-read m anuals, providing information that is easy to understand for people with intellectual disabilities.
Provide sign language videos for people with hearing impairments, featuring important topic exchanges.
 
Accessibility
Rehabilitation buses and assistive device services make life more convenient.
There are assistive device resource centers, service points, and assistive device convenience stations that provide free rental of wheelchairs, crutches, walkers, and commode chairs, helping people access assistive devices promptly.
 
Gender equality
Tailor-made care packages to support the sexual health of people with intellectual disabilities.
Provide care packages based on the individual needs of each person with spinal cord injury, with volunteers offering care during distribution.
Pioneered the "Sexual Health Counseling and Support Service for People with Intellectual Disabilities" to support their needs for friendship, interaction, and self-protection.
 
Respect children and protect the rights of children with disabilities
Enrich early intervention resources to protect children with developmental delays.
Multi-sensory therapy classrooms provide diverse sensory therapy courses for those with intellectual development delays, disabilities, or dementia.
Establish early childhood development service management centers and community therapy points for children with developmental delays, offering developmental assessments and early intervention.

Monika Osmianskiene has always believed:
Every person with a disability is an angel.
Every parent of a person with a disability is an angelic parent.
The well-intentioned laws passed in three readings for every person with a disability not only benefit the disabled but also their parents who tirelessly and unwaveringly protect them. These laws provide respite services and space for everyone to be cared for.
 
Most admirably, Monika not only fights relentlessly for the basic human rights of all people with disabilities but also shares her own experience of living with a rare disease:
Muscular dystrophy is a collective term for neuromuscular diseases that come in many different types, each affecting different parts of the body and presenting different symptoms. Patients with muscular dystrophy may experience muscle weakness, spasms, tremors, degeneration, and atrophy as their condition worsens. Some may also have difficulty swallowing, coughing, and declining respiratory function, which not only negatively impacts daily life but can also be fatal in severe cases.
Stretching and strength training are very important for the prevention and health maintenance of spinal muscular atrophy.
Rehabilitation physicians or physical therapists will assess the patient's joint mobility, muscle strength, and flexibility, recommending exercises or assistive devices to help maintain optimal breathing and eating postures.
Physical therapists can use exercise and assistive devices to improve overall flexibility.
Occupational therapists can help patients increase their independence in specific daily tasks, such as dressing, bathing, or using utensils.
 
Therefore, Monika Osmianskiene, whether challenging herself to complete a master's degree or becoming a voice for the people; whether living her best each day or helping others live with hope every day, always steps forward and focuses on legislation, week after week sharing her story. She selflessly helps others, opening a window for people with disabilities, accompanying them out of the shadow of rare diseases into the warmth of sunlight. She truly deserves the title of "Lithuanian Muscular Dystrophy Parliamentarian," emerging from 3,499 globally recommended candidates for the Love of Life Medal to win the "2024 27th Fervent Global Love of Lives Movement " awarded by Taiwan's Chou Ta Kuan Cultural and Educational Foundation.
 
Seeking Life Warriors in 233 Countries Worldwide
 
Everyone unlocks the shackles of life, and everyone's life becomes infinitely broad.
For 27 years, the has continuously promoted the " Fervent Global Love of Lives Movement" with the support and encouragement from all walks of life at home and abroad, advocating for loving one's own life, respecting others' lives, and preserving the life of the earth.

So far, we have honored 459 Fervent Global Love of Life Medal winners from 79 countries across seven continents, 16 Global Love of Life Literary Creation Award winners such as the benevolent poet Zheng Chouyu and the chef poet Song Chengbao from Mainland China, as well as 41 Hope Medal winners like the anti-drug hero Gao Zhaoliang and the wanderer Ji Dong Wu Shixuan. We also care for and protect over 350,000 of the world's most vulnerable children with cancer, like Mary Donita Uy, an angel with bone cancer from the slums of the Philippines—using love to fight cancer and live out hope.

Gratefully acknowledged by CNN, BBC, NHK, Yahoo, YouTube, Facebook, Baidu, and other media, both old and new, for their recognition and resonance, expanding coverage and sharing our story as the "Nobel Prize of Life."
We are deeply grateful for the recognition received, including the National Public Welfare Medal in 2001, the Hong Kong Loving Heart Medal in 2010, the Ministry of Education Social Education Contribution Medal in 2018, the Colombian Congress Resolution No. 61 in 2019: awarding the highest commendation medal, the United Nations NGO Organization World Harmony Outstanding Contribution Medal in 2021, and the Chinese mainland Huaxia Filial Piety Cultural Award in 2022. Through these accolades, we share, encourage, and strive together with people around the globe."
 
This year, 24 recipients of the "Fervent Global Love of Lives Award" from among 3,499 nominees worldwide. They excel in various domains of life, such as pioneering maternal love, international acts of kindness, perpetuating the symphony of life, perseverance, creating new possibilities, lifelong dedication to a cause, multifaceted rebirth, writing hope, creating new values, transforming lives, leveraging advantages of disabilities, and aiding the most vulnerable. They dedicate every moment to unlocking life's code and initiating global actions for the common good.
 
Our organization warmly welcomes recommendations for life heroes globally, recognizing efforts, compassion, bravery, and achievements. (Taiwan Chou Ta Kuan Cultural and Educational Foundation Fervent Global Love of Lives Award recommendation hotline: +886-2-29178770, Fax: +886-2-29178768, Address: 3F, No. 52, Mingde Road, Xindian District, New Taipei City 231, Taiwan, Website: http://www.ta.org.tw, Email: ta88ms17@gmail.com).
 
Spreading Love for Rare Diseases
 
Monika Osmianskiene was born on December 26, 1978, in Vilnius, southeastern Lithuania, which is now the capital and also the economic, financial, and cultural center of Lithuania.
 
Monika is an optimistic and happy person who cherishes every day, allowing her to inspire everyone to enjoy this beautiful and colorful world together.
 
Monika and her beloved husband both have fulfilling and successful careers.
 
Yes, Monika has a disability and cannot walk, but this does not define her life or abilities. She hopes everyone can feel this way, regardless of whether they have physical or intellectual disabilities, injuries, or other limitations. Everyone has the right to enjoy life.
 
When Monika was born, she was a healthy child. Not only that, but she was also an active child who participated in many sports activities and tried everything.
 
Therefore, the onset of muscular dystrophy, a genetic disease, during her teenage years was like a bolt from the blue. Initially, Monika couldn't lift one arm, and six months later, she couldn't lift the other arm either. Eventually, climbing stairs became difficult, and after falling, she couldn't stand up. Her health would only worsen, with no treatment available, and her life expectancy was unpredictable.
 
When Monika finished her studies, public transportation, which was inaccessible to people with disabilities, became too difficult to use. She thought she would not be allowed to drive, but her mother encouraged her to get her driver's license and drive herself to university classes.
 
Monika studied programming at the Faculty of Mathematics and Informatics at Vilnius University. At that time, walking was already difficult, so although she managed to complete her bachelor's and master's degrees, she did not obtain the highly desired Ph.D. because her faculty was not wheelchair accessible.
 
These are situations that are difficult for people who have not encountered them directly to understand, which prompted Monika to start fighting for universal accessibility for people with disabilities.
 
Monika hopes that everyone has the same rights and opportunities to live a simple life and enjoy everything life has to offer, regardless of their abilities.
 
For a long time, Monika lived in isolation from the outside world, surrounded only by those closest to her. Having a disability and needing to use a wheelchair put her in a state of constant shame and helplessness.
 
Monika observed that the world around her was changing, with Lithuania joining NATO and the EU, and funds pouring in to build universal infrastructure, starting rapid modernization and transformation.
 
But for Monika and her community, things did not become more inclusive. This brought sadness and disappointment, and as her anger and dissatisfaction grew, she decided she couldn't just stand by and wait for transformation to come. She could create transformation herself.
 
Overcoming obstacles
 
For Monika, this was a challenge because years of seclusion had made her afraid of people and the outside world.
 
Monika had to overcome her fear and shame about her situation.
 
Monika joined a newly established organization for people with disabilities called "Independent Life." Together, they planned marches and other activities to raise awareness.
 
Monika also took action on her own, contacting contractors for various construction and renovation projects. She invited them to meet and discuss how to make these spaces accessible to everyone. People listened! Her advice helped avoid accessibility mistakes at places like the National Drama Theatre and Vilnius Conference Hall.
   
This made Monika realize that more often than not, accessibility was simply not considered in all aspects, especially by able-bodied legislators who lacked proper expertise. It wasn't intentional avoidance. If someone spoke up, change was possible. She was inspired to become that prophetic voice.
 
Make the changes you want to see   
 
Monica quickly realized that by exerting pressure on politicians, she could accomplish more.
 
Monika began looking for a political movement that aligned with her values. She eventually joined an emerging and youthful liberal movement, called the Freedom Party (Laisvės partija).
 
Monika hoped to get to know everyone and present ideas that could be implemented.
 
Instead, people suggested Monika run for the city council of the capital, Vilnius. Although surprised, she decided to take on the challenge. Only then did she realize how difficult this challenge would be.
 
At that time, no one really knew about Monika’s situation in a wheelchair. Running for office meant having to appear publicly—posting photos, talking openly about her story, and ultimately presenting herself as a person with a disability.
 
Such exposure was frightening but also liberating for Monika. She was shedding her shame, accepting who she was through this change, which gave her the strength to fight for public good.
 
Thus, as a completely unknown person with only 60 Facebook friends, Monika ran for the Vilnius City Council election. People believed in her and gave her the most friendly votes, which motivated her to further commit herself wholeheartedly.
 
Monika’s main goal was to ensure that the topic of disabilities appeared in all departments and offices of the capital city government, not just the social services department. She started making changes from within—cleaning up cluttered accessible bathrooms and introducing an adjustable-height podium.
 
Then Monika pushed for bigger changes—increasing the budget for assistive learning, implementing universal design principles for children's playgrounds, making three lake beaches and a fishing spot accessible, and finally allowing people with disabilities to visit Vilnius City Hall.
 
These were just some of Monika's many initiatives in the city council, all of which made her realize that with enough determination, much could be accomplished for the public good. She firmly believed that if she could make changes in the capital, Vilnius, she could achieve her goals throughout Lithuania.
 
 
Where there is a will, there is a way
 
Therefore, Monika did not hesitate to run for parliament. Most of her colleagues in the Freedom Party were newcomers in the legislature and had to learn quickly. Joining the ruling coalition meant they had real power to effect meaningful change.
   
For Monika, her first goal was to become chair of the Committee on Disability Rights, a position protected by legislative statute. Similar to her time in the city council, she initiated changes within the legislature—raising standards for accessibility and introducing adjustable podiums. In parliament, she proposed new legislation one after another:
   
Children in educational institutions will have access to medical aid, crucial for preparing everyone annually to educate children with disabilities fully.
   
People with disabilities now have the right to stay in the hospital with their relatives.
   
Everyone should have the right to independent living, so Monica included these rights for people with disabilities in the new reforms, now the state has a duty to ensure.
    
All local governments will soon have dedicated coordinators focusing on matters involving people with disabilities.
   
Additionally, Monika ensured that assistants for persons with disabilities could participate in activities for free during working hours; individuals with dwarfism and mobility impairments were provided with accessible transportation; accessibility spaces were managed by the state for public benefit; and subsidies were provided for technical aids and hearing aids for people with disabilities during voting.
   
In other areas, during Russia's invasion of Ukraine, Monika proposed initiatives to protect Lithuania's democratic principles, banning the use of war symbols such as the letter "Z" and many others.
   
Monica also implemented preferential tax rates beneficial for hearing aids and electronic books, making them more accessible to people with disabilities.
   
Finally, Monica restricted the use of single-use plastic bags due to their harmful impact on the environment.
   
Now, Monica is eager to do more philanthropic work in the future.
   
Overall, Monica's journey taught her to overcome shame and fear, instilling confidence in her identity. She learned not to wait for things to happen but to take action herself.

Only by taking action oneself can things be accomplished. This is the positive message Monica spreads to every corner of the world.
 
Sharing alternative rehabilitation methods.       

Monika, in addition to being a voice for the people, enthusiastically shares alternative rehabilitation insights.
 
Due to the varied clinical manifestations of spinal muscular atrophy (SMA), accurate diagnosis is crucial for designing and implementing rehabilitation plans. Comprehensive treatment requires a complete healthcare team to address the diverse needs of patients. This allows patients to discuss and develop appropriate rehabilitation plans with occupational therapists and physical therapists, thereby enhancing their comfort and quality of life.
 
For those who are unable to maintain sitting posture: The main treatment goals are to optimize functionality, reduce symptom damage, and enhance acceptance of various postures.

For those who can maintain sitting posture: The primary goals are to prevent contractures and spinal curvature, as well as to maintain, restore, or promote functionality and mobility.

For those who can maintain a sitting position: The main goals are to prevent contractures and scoliosis, and to maintain, restore, or promote function and activity capabilities.

For those who can move: The primary goals are to maintain, restore, or promote function, activity, and sufficient joint mobility, while improving balance and endurance.

Top | Back