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Internship Summary: Memorable Impressions of Shining Star

October 5, 2016 Olivia's Place Comments Off , ,
Philip Pikus, Shanghai Intern, Summer 2016

Philip Pikus, Shanghai Intern, Summer 2016

My experience at Shining Star was unbelievable, and I will cherish the opportunity to have spent three weeks with an amazing group of boys and girls! Firstly, the adults at Shining Star, Julie, Jingxia and her husband, the ayis, and all visiting therapists/volunteers do an absolutely wonderful job to create this loving and caring environment for the children. My time at the residential home has allowed me to work with both “typically” developing children, as well as children with a wide range of disabilities. I was able to play dinosaur games and build Lego with some of the fully functioning children, but I was also able to go on walks, play music for, and simply hold hands with boys and girls who were learning these basic functions. In the process, I went on an “outing” to a giant playground, observed therapies, and accompanied some of the children on a trip to Shanghai United Family Hospital to visit a world-class neurologist.

A few of my best memories from my time at Shining Star are as follows: On my first day, one of the other workers at the home asked some of the fully functioning children what they’d like to call me. When they couldn’t pronounce “Philip”, one child announced he would call me “gege” (older brother), and that stuck! One boy, Tom, who is blind and has minor learning disabilities, and is the only English speaker, immediately attached to me and asked me to do therapy with him. We became close friends with him somehow guessing where I was from with the hint, “I am from the biggest city in the USA”. New Jersey was the correct answer, although it is certainly not the biggest city in the USA! I promised him I would write him letters in the future. Lastly, I formed the closest bond with LeiLei, a 5 or 6 year old boy who appeared severely disabled. Upon seeing the neurologist, I realized that many of his problems, aside from blindness, are a result of his lack of stimulation and malnutrition prior to arriving at Shining Star. LeiLei attached to me every time I came through the door, wanting to be carried or held constantly. We would go hours hugging, without any words shared, but I could always feel the close bond we were creating. It was quite difficult saying good-bye to the children, but I look forward to receiving updates on their well-being, and hopefully to see the boys and girls again next year!

Philip Pikus interned at LIH Olivia’s Place and volunteered at Shining Star during the summer of 2016. He is studying Biology and Chinese at Bowdoin College (US) and plans to graduate in 2019.

Shining Star is a non-governmental organization (NGO) which provides foster care for visually impaired orphans in Shanghai. Shining Star opened in June 2012 and is part of Mifan Mama, a charity group that provides food, clothing, educational support, medical support and equipment to orphanages throughout China. Shining Star is a residential home for blind and partially sighted orphans. The foster home creates individualized development plans for the children and offers 1:1 and group care. They also collaborate with local and international hospitals to help provide eye and heart surgeries for some of the children. A team of specialists from LIH Olivia’s Place, including physical, occupational and speech therapists, support the children and caregivers weekly.


Physical Therapy Team Trains Therapists in Kunshan

October 5, 2016 Olivia's Place Comments Off , , , , , ,

Physical Therapists Ilija Dimitrovski and ZiLi Wang recently trained therapy staff at Kunshan’s Jiajie Rehabilitation Center. The center is affiliated with the China Disabled Persons’ Federation and serves as an important resource for children needing rehabilitation, especially children with cerebral palsy or autism. Staff at the facility include physical and occupational therapists as well as speech therapists and learning support. The training provided by the LIH Olivia’s Place team focused on improving the staff’s ability to plan treatment and introduced new standardized assessment tools, as well as teaching specific techniques for children with cerebral palsy. Feedback from the course was positive, with the center’s president, Dr. Shao Ping, looking for continued partnership with LIH Olivia’s Place, including receiving occupational therapy and speech therapy experts for additional training in the future.

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Get the Facts on Central Auditory Processing Disorder (CAPD)

October 5, 2016 Olivia's Place Comments Off , , , ,
Daniel Baliicki, MSc, Audiologist NEWWAVE

Daniel Baliicki, MSc, Audiologist
NEWWAVE

Our senses connect us to the outside world. They help us perceive and structure our surroundings. Hearing is probably our most important sense as it gives us access to spoken language, necessary for the development of speech, language, and communication in general.

Development of speech and language in children is a continuous process, in which the first years of life are of the greatest importance. Normal function of the auditory sensory organs and the central auditory pathways is a prerequisite for the normal development of speech and language in children. For a number of children the process of developing speech and language is hampered and their ability to communicate effectively does not develop in a straight forward fashion.

 

What is Central Auditory Processing?

It’s the auditory mechanism and processes responsible for:

  • Sound localization and lateralization
  • Auditory discrimination and pattern recognition
  • Temporal aspect of audition
  • Auditory performance with competing or degraded signals

 

Children with Central Auditory Processing Disorder (CAPD) display a number of behaviors similar to the symptoms associated with sensorineural hearing loss. For example, they may complain that they find it difficult to hear when the classroom is noisy.

These behaviors may become apparent in the early school years, or at a later stage of the child’s life, due to changes in the acoustic environment, or to increased academic demands.

So what specific auditory abilities are affected if a child has CAPD? The American Speech Language Hearing Association (ASHA) defines CAPD as a deficit in one or more of a number of skills, including difficulties knowing where a sound is coming from (sound localization); the ability to detect changes in the duration of, and time intervals between auditory stimuli (temporal processing); and the ability to detect spectral variations in auditory stimuli (particularly those that differentiate sounds according to formant transitions between phonemes).

 

Causes of CAPD

We don’t know exactly what causes CAPD, but the neural pathways of the central auditory nervous system are involved in some way. Children who have experienced repeated episodes of otitis media (glue ear) may be particularly susceptible to CAPD, perhaps due to the fact that their hearing levels fluctuate during periods of infection, affecting normal exposure to sound and compromising development of the auditory pathways. However, many children with CAPD have never had glue ear. CAPD affects about two to five percent of children and there are twice as many boys than girls with CAPD.

 

Diagnosis 

Routine audiological tests will not diagnose CAPD and pure tone audiometry results are typically normal for children with CAPD. At NEWWAVE we are using a special test designed to diagnose CAPD. It’s called the Listening in Spatialized Noise – Sentences Test (LiSN-S). This test assesses auditory skills in children who may be having difficulty listening to and following speech, for example, in the classroom.

LiSN-S evaluates a child’s hearing comprehension in four different conditions. A number of sentences are presented under headphones, initially at 62 dB SPL, in the presence of two distracter stories presented at fixed intensity of 55 dB SPL. The distracter stories vary in both their position in space (coming from either directly in front of the listener, or at either side of the listener); and in the vocal quality the speakers. The listener’s task is to repeat each sentence heard. The intensity level of the target sentences is adjusted to find the level at which the listener is getting 50 percent of word correct in each sentence which is called “speech reception threshold” (SRT).

Based on the test results we can determine if there are any audiological indications of and recommend treatment . The minimum age for testing is 6 years old and the child must be fluent in English.

For more information, please contact:

BEIJING

NEWWAVE at LIH Olivia’s Place Beijing

3 Jiu Xian Qiao Road, Building 6-1, Second Floor, Chaoyang District, Beijing, China 100016 Office: (010) 6461-6283

Email: china@newwave-hearing.com

SHANGHAI

NEWWAVE

9 Joy Tower, Level 15, Room C, No.9 Zhenning Rd, Shanghai Office: (86) 021-52388137

Email: china@newwave-hearing.com

 


Teaching Therapists at an Anhui Welfare Center

September 8, 2016 Olivia's Place Comments Off , , ,

This summer, Physical Therapist ZiLi Wang and Occupational Therapist Irene Zhang, both of LIH Olivia’s Place Shanghai, conducted their third visit to an orphanage in Anhui province, following up on their previous teaching while introducing new assessment tools and techniques.

Zili Wang, PT, works with a child at the welfare center.

Zili Wang, PT, works with a child at the welfare center.

The welfare center, the YingShang County Social Children Welfare House, was initially started in 1994 under another name – the Wang Family Foster Home – and has grown from a small labor of love to one of the biggest welfare centers in the province, having cared for over 500 disabled orphans over its 22-year history. It had moved locations multiple times before settling into its current location in YingShang County.

Mr. Wang and Ms. Zhang taught therapists how to assess and treat the children, but also how to handle them with minimal risk of injury to the therapists themselves. This included techniques on manual handling favoring the usage of the legs over the back, and pivoting techniques to move heavier children. How to handle behavior was also an important topic this visit, including a detailed lecture on how to motivate children and how to properly use rewards and praise to encourage certain behaviors.

We look forward to the next chance to share our knowledge with the hard working therapists in Anhui!

Irene Zhang, OT, teaching welfare center therapists.

Irene Zhang, OT, teaching welfare center therapists.


The Thinking Behind Social Thinking

September 2, 2016 Olivia's Place Comments Off , ,
by Veronica McKibbin, Child & Family Counselor, LIH Olivia's Place Shanghai

by Veronica McKibbin, Child & Family Counselor, LIH Olivia’s Place Shanghai

Jamie, now 8 years old, has moved to Shanghai with his parents and younger siblings. Jamie was diagnosed at age 3, with what was then known as Asperger Syndrome (now grouped into the DSM-V’s broader category of Autism Spectrum Disorder) by a team of specialists in his home country. Jamie is a sensitive and often funny young boy, who has, over time, had many special interests. Upon arriving in Shanghai he developed an enthusiasm for architecture, in particular tall buildings. Jamie has strong expressive verbal language skills and cognitive development. However, he also shows marked weakness in his social communicative learning. He can talk at length about the height and facts about famous landmarks, however pays little attention to if the ‘listener’ is engaged or even participating in the conversation. He also finds some academic areas difficult, particularly written expression where he is required to interpret information about what people are thinking or feeling. Organizational skills are especially challenging for him. He also found the social emotional demands of moving to a new school and city overly taxing on a system already stretched to capacity, and his family noticed he was now having frequent and intense emotional outbursts. One of the recommendations for Jamie from his class teacher was that he attends a “social skills” group.

 

Teachers, parents, doctors, or therapists refer children to a “social skills” group for a variety of reasons. Sometimes the child is perceived as shy or anxious around their peers; they may feel the child has difficulty initiating or maintaining friendships. Referrers often feel the child would benefit from some pragmatic social language instruction, that is, learning specifically about how to use language appropriately in social situations. Often children (such as Jamie) have particular challenges in managing their behavior in an expected and socially accepted way for their age in relation to their peers.

LIH Olivia’s Place currently offers social skills groups based on the social cognition program developed by Michelle Garcia Winner, known as “Social Thinking.” The Social Thinking program is not designed to cover all “social skill” difficulties. Rather, it is designed to be most effective for Emerging Social Communicators, with the goals of the group to help children improve in the areas of: Joint Attention, Perspective Taking, Developing Reciprocity, Communicative Intent, and Using Language to relate to others. Social Thinking is a language-based learning approach, and so to benefit from this approach, children require solid to advanced verbal language skills. Read more


LIH Olivia’s Place Occupational Therapist Presents in Kuala Lumpur

August 31, 2016 Olivia's Place Comments Off , , ,
Fengyi Kuo, DHS, OTR, CPRP Occupational Therapist LIH Olivia’s Place Shanghai

Fengyi Kuo, DHS, OTR, CPRP
Occupational Therapist
LIH Olivia’s Place Shanghai

On May 29 – June 2, the tenth International Society of Physical and Rehabilitation Medicine (ISPRM) Congress took place in Kuala Lumpur, Malaysia. In accordance with the theme of “Embracing and Empowering Rehabilitation Medicine: from Knowledge to Practice,” innovative scientific sessions were presented by experts from the field to share their knowledge and experience. Passionate about community based rehabilitation and program development, Fengyi Kuo, one of our occupational therapists, was invited to speak at the Congress. Her two studies, entitled “Stop Taking on Pounds (STOP): A Pediatric Weight Management Program for Underserved, At-Risk Minority Children” and “Social Participation in Community-Dwelling Older Adults through the Lifestyle Redesign Program®”, both focus on health promotion and community based program development and evaluation were scheduled as oral presentations. Another community-based rehabilitation project for minority youth, “Life Skills Training for Adolescents Resettled in the United States from Southeast Asia” was scheduled as a poster presentation. All three presentations were well received.

 


LIH Healthcare Hosts Pre-Conference Workshops at ISPRMDC

August 31, 2016 Olivia's Place Comments Off , , , , , , , , , , , , ,

The International Society of Physical and Rehabilitation Medicine for Developing Countries (ISPRMDC) held its third annual conference from July 28 – 31 in Kunming, China. This year, the conference featured a special pre-conference workshop series hosted by LIH Healthcare, conference corporate sponsor. The workshop series was led by a group of internationally renowned rehabilitation experts, who are also members of LIH Healthcare’s Consultant Advisory Board. They discussed 3 trending rehabilitation topics, “Spasticity Management,” “Cardiac Rehabilitation,” and “Motor Control and Learning.” The workshops introduced cutting-edge concepts and included on-site demonstration with the most advanced technology in the field. Focusing on enhancing awareness on how to promote patients’ functional ability and quality of life, the workshop series gained attention from international and local rehabilitation communities.

Audience ISPRMDCThe first workshop, Spasticity Management, was led by Dr. Gerard Francisco and Dr. Heakyung Kim. Both are well known rehabilitation professionals. Two breakout sessions included “Contemporary Strategies for Post-Stroke Spasticity Management” and “Strategies of Spasticity Control in Cerebral Palsy Children.” Dr. Francisco is the current Director of the American Board of Physical Medicine and Rehabilitation and Chief Medical Officer of TIRR Memorial Hermann. He is also a clinical professor and Chairman of the Department of Physical Medicine and Rehabilitation at the University of Texas Health Science Center at Houston Medical School. Dr. Kim is the Fellowship Program Director of Pediatric Rehabilitation Medicine and Director of Pediatric Physical Medicine & Rehabilitation Medicine at Morgan Stanley Children’s Hospital of New York Presbyterian Hospital in New York City; she also serves as A. David Gurewitsch Professor of Rehabilitation and Regenerative Medicine and Professor of Pediatrics at Columbia University Medical Center and Weill Cornell Medical Center.

”Cardiac Rehabilitation” workshop sessions were led by Dr. Matthew Bartels and Professor Alice Jones, also two very renown rehabilitation experts. The two breakout sessions included “Physical Medicine and Rehabilitation Medicine Physician in Cardiac Rehabilitation: Restoration of Function and Health” and “The role of a Physiotherapist in Cardiac Rehabilitation.” Dr. Bartels is the current Chairman of the Department of Rehabilitation Medicine at Montefiore Medical Center/Albert Einstein College of Medicine in New York. He has also been prominently engaged in the American Board of Physical Medicine and Rehabilitation, Association of Academic Physiatrists, Association of American Physicians, and the International Society for Heart & Lung Transplantation. Professor Jones is an international expert in cardiorespiratory physical therapy; she is currently an Honorary Professor at the University of Sydney.

The “Motor Control and Learning” workshop session was led by Professor Fengyi Kuo and Therapist Ching-Chun Lin. The session was rolled out with a deep dive from theoretical lecture to practical experience. Professor Kuo is currently an occupational therapy clinician at LIH Olivia’s Place, Shanghai, and a visiting professor at Indiana University/IU School of Health and Rehabilitation Sciences in Indianpolis, Indiana, United States. She also serves on the American Occupational Therapy Association (AOTA)’s Childhood Obesity Prevention and Health Promotion Work Group. Ching-Chun Lin is an experienced physical therapist with extensive clinical and research experience in neurology, pediatrics, orthopedics, geriatrics, and neurocognitive fields. She has previously served as Physical Therapist Lead of the Rehabilitation Medicine Department at Zhonghe Memorial Hospital of Kaohsiung Medical School.

ISPRMDC Pre-Conference Presenters and LIH Healthcare Executives

ISPRMDC Pre-Conference Presenters and LIH Healthcare Executives

The sponsor of the the pre-conference series, LIH Healthcare, is a leading rehabilitation provider in China, with multiple clinics in major cities including Beijing and Shanghai. In 2016, LIH Healthcare will open Shenzhen LIH Olivia’s Place, followed by Kunming SkyCity Rehablitation Hospital, the first large-scale rehabilitation hospital in southwestern China. LIH Healthcare’s mission to bring best high quality rehabilitation services and reputation for clinical and management best practices has gained the technical support of many national and international experts including the clinical experts represented on the company’s Consulting Advisory Board and Technical Advisory Board, as well as partner organizations including Children’s Specialized Hospital (New Jersey, US) and Montefiore Medical Center, (New York, US).


LIH HealthCare Brings Train the Trainer Model to Chinese Cardiopulmonary Rehabilitation

August 31, 2016 Olivia's Place Comments Off , , , , ,

“It exceeds far beyond my expectation; it is truly a training program that separates from most of the so called ‘training’ offered in the market these days.”

                                                      – Mr. Qian, training participant

 

The first Cardiopulmonary Rehabilitation Theory and Clinical Procedure Training Program came to a close on 30 July 2016 in Beijing. Instructed by a team of 14 highly distinguished trainers including Dr. Matthew Bartels, Chairman of the Department of Rehabilitation Medicine at Montefiore Medical Center/Albert Einstein College of Medicine, Professor Dayi Hu, Chairman of China Heart Federation, and Professor Leming Wang, Managing Director of Chinese Association of Rehabilitation Medicine, the 7-day program has received record attention from the cardiopulmonary rehabilitation professional community and a well-established reputation since the first day of the training.

Training participants were the 61 national finalists selected from 200 applicants to join the first pilot program. All of them are current clinicians such as physicians, nurses, and therapists, as well as hospital administrators. By the end of the training, qualified graduates were awarded with the joint graduation certificate to become certified trainers recognized by LIH Healthcare, China Heart Federation, Montefiore Medical Center, and Chinese Association of Rehabilitation Medicine.

 

Dr. Matthew Bartels, Member of the LIH Healthcare Consulting Advisory Board, teaching on the first day of the training program.

Dr. Matthew Bartels, Member of the LIH Healthcare Consulting Advisory Board, teaching on the first day of the training program.

High-Ranking Trainer Brings Quality and Perfection

“Dr. Matthew Bartels attracted crowds of training participants after the class,” said Dr. Jie Zhang, Executive Vice President of Strategy & Corporate Development and Director of Clinical Liaison Leadership at LIH Healthcare. Cultural differences are commonly seen as a challenge for many western rehabilitation trainers in the larger context of China’s medical environment. Dr. Bartels is well aware of the challenge and capable of bringing effective learning to Chinese audiences by collaborating with prestigious healthcare organizations in the local market. “Dr. Bartels is highly engaged with Chinese training participants, and is also well-guided thanks to the successful collaboration with our professional training team”, remarked Dr. Zhang.

Training participants expressed their opinion of the course on the post-training satisfaction survey. The training sessions led by Dr. Bartels claimed 100.00% satisfaction rate from 51 out of 61 training participants on almost all teaching topics.

 

Dr. Bartels conducting an Incremental Shuttle Walk Test with a training participant

Dr. Bartels conducting an Incremental Shuttle Walk Test with a training participant

Strong Emphasis on Practical Experience

As the key architect and instructor of this training program, Dr. Bartels is well recognized in the world of cardiopulmonary rehabilitation.  His teaching format stretched from lecture presentations to practical learning through case discussion and demonstration. Training participants gained a wealth of knowledge by having intense case discussion with their team members with a side selection of scenarios varying from hospital-based outpatient programs to home-based cardiac programs. In the session of Basic Exercise Physiology for Cardiac Rehabilitation, training participants were instructed by Dr. Bartels on the Incremental Shuttle Walk Test to strengthen their knowledge of aerobic training.

 

Participants discuss analysis of a 6-minute walking test provided to an 80-year-old patient.

Participants discuss analysis of a 6-minute walking test provided to an 80-year-old patient.

“It is actually a far better result than attending professional conferences overseas, the training has been a very effective learning experience in many different ways.”

-Ms. Liu, training participant

Due to the practical theme of the training, many participants found it extremely beneficial to have frequent opportunities to exchange ideas between instructors and fellow students, which consisted of experienced healthcare professionals from diverse disciplines, departments and backgrounds. Most of the practical experiences were closely integrated with clinical scenarios with specific and detailed explanations to demonstrate the mapping process of clinical reasoning and diagnosis.

 

The Future of Cardiopulmonary Rehabilitation Training in China

Through examining the situation of limited highly qualified cardiopulmonary rehabilitation training resources in China, LIH Healthcare recognizes that the future of cardiopulmonary rehabilitation here will be realized through the delivery of high quality training services that offer participants the opportunity to gain professional skill and hone their expertise. LIH Healthcare believes in the value of investing in the development of China’s rehabilitation healthcare professionals and will continue its strong commitment to increase professionalism in the rehabilitation community in China.


Olivia’s Foundation Focus: Bethel

August 30, 2016 Olivia's Place Comments Off ,

Some of the most rewarding work we do is through the pro-bono efforts of Olivia’s Foundation. Olivia’s Foundation is the non-profit foundation arm of LIH Olivia’s Place. Our mission is to provide pro-bono and subsidized therapy for special needs children with financial challenges, provide training to caregivers and parents of children with special needs, and promote awareness about special needs children and persons with disabilities. The Foundation works with numerous welfare centers, foster care homes, and non-profit organizations.  We are very proud to have partnered and worked with Bethel, a home for children with visual impairments.

Bethel has four centers for blind children, each with a different focus, including early intervention, primary school, high school, and long-term care. Children come to Bethel from over 35 welfare centers across the country to receive individual care and education with a focus on visual impairment.

Many of Bethel’s preschool children have multiple needs or have developmental delays due to lack of early intervention. When the children arrive at Bethel, each gets an IEP (Individualized Education Program).  LIH Olivia’s Place has teamed up with Bethel to provide assessments in physical therapy, occupational therapy, and speech-language therapy to develop goals for the children.

Bethel started a relationship with LIH Olivia’s Place in 2012. At that time, the pro-bono effort was more focused on assessments and training Bethel staff since Bethel had more children with multiple needs (mostly autism). In the last couple of years, Bethel has had many successful adoptions of these children.  Having clinical reports from LIH Olivia’s Place therapists for adoptive families to review has been very helpful in the adoption process.

DongQiang with his new wheelchair.

DongQiang with his new wheelchair.

However, because of the complexity of the needs of many of the Bethel children, many are still waiting to be adopted. To help these children and their caregivers, LIH Olivia’s Place therapists have provided individual occupational and speech therapy sessions since 2015. The children typically attend six or more sessions along with their Bethel caregivers and teachers so they can learn how to help the children make progress at home. Between 2015 and 2016, 11 children have benefited from occupational, speech, and physical therapy from LIH Olivia’s Place. A couple stories are shared below.

Dong Qiang is a Bethel boy who has cerebral palsy in addition to visual impairment. An LIH Olivia’s Place occupational therapist created a postural management report, which helped Bethel determine which wheelchair would be the best fit for him.  She also connected Bethel with the wheelchair’s manufacturer. DongQiang’s quality of life has improved dramatically by having a wheelchair that supports him and is a better fit for his needs.

TWenYanghis year, Wen Yang attended both speech and occupational therapy at LIH Olivia’s Place. Wen Yang has a condition called cortical visual impairment. Children with this condition are visually impaired because the brain has trouble interpreting the information the eyes perceive, and Wen Yang presented with delays often associated with this condition. When he started therapy at LIH Olivia’s Place, he showed very little interest in toys and could only move by scooting across the room. By the third session, he surprised everyone by walking away from the room. During therapy, he also learned to play with toys and is now a much more engaged and happier child. LIH Olivia’s Place therapists were so encouraged by his progress that they continued to work with him for a few additional weeks. Wen Yang is now attending preschool at Bethel and is able to play with other boys his age.

These two stories are just a highlight of some of the progress and success that therapy has brought to the children at Bethel. At Olivia’s Foundation, we aim to help more children at Bethel and other organizations such as Bethel to make strides in their development and live happier and more fulfilling lives.


SMA Patients Get a Boost in China

August 26, 2016 Olivia's Place Comments Off , , ,

6P5A4178To honor Spinal Muscular Atrophy (SMA) Awareness Month this August, the first China SMA conference was held successfully in Beijing on August 6, 2016. Organized by Beijing Meier Advocacy & Support Center for SMA, nearly 200 SMA patients and their families attended the conference to gain important knowledge about the condition as well as treatment and therapy options. The speakers included leading experts in clinical SMA, genetics, genetic screening, prenatal diagnosis, rehabilitation therapy, and drug research areas from the USA, Taiwan, Hong Kong and the mainland. LIH Olivia’s Place was proud have Eva Ma, Occupational Therapist at our Beijing Clinic, as a speaker during the conference.

Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 people is a genetic carrier. SMA can affect any race or gender.

Though there is not yet an effective pharmaceutical treatment for SMA, various nursing services and therapies can delay progression of the disease, improve life quality, and earn more time for drug research. With the current progress in genetics research, SMA has been identified by the US National Institute of Health (NIH), as one of the neuromuscular diseases which will likely yield promising breakthroughs. However, in China, therapy and rehabilitation services available to SMA patients in China are underdeveloped and a lot of work remains on increasing clinical research and therapy, rehabilitation and education. SMA patients and their families lack the knowledge, access to resources and treatment/therapy options that are the standard for SMA patients in the rest of the world.

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Eva Ma, Occupational Therapist, offered a dynamic presentation, demonstrating key concepts to conference participants

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LIH Olivia’s Place aims to help to close the gap when it comes to providing high-quality rehabilitation services to pediatric SMA patients in China. Eva Ma’s 90-minute presentation was titled “Positioning Children and Teenagers for Function,” and included valuable information about how to effectively position children with SMA for effective skeletal and muscular development and to maintain the most efficient respiratory (breathing) functions and feeding and nutritional status. Eva emphasized the importance of regularly changing a child’s position, which is critical for developing gross and fine motor skills, maintaining functional use of their hands, and preventing further deformities. It is critical to provide solid support for a child with SMA in all different positions so that they have the stability needed in order to maintain proper body alignment throughout the day.

ThiIMG_2416s functional presentation was very well-received by conference participants, and the Q&A session spilled over its allotted time, as many parents sought out Eva’s expertise on specific challenges their children are facing.

With the large demand of SMA patients needing access to high-quality rehabilitation services in China, LIH Olivia’s Place and Olivia’s Foundation are now partnering with Beijing Meier Advocacy Group to assist these children and their families. We look forward to making a difference in the lives of children with SMA!

Meier Advocacy & Support Center for SMA was founded by actress Feng Jiamei and SMA Type III patient Ma Bin. It is a non-profit organization dedicated to helping people with SMA and supports families through networking, information, and services and sponsorships. The organization maintains the Chinese SMA Patient Registry and collects clinical and genetic information of individuals affected by Spinal Muscular Atrophy to promote clinical trials in China.


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