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11.01.2014


The Triangle of Care, which is run by the Carers Trust, brings carers, service users and professionals closer together to jointly promote the recovery of people with mental health conditions. The Trust was accepted as a member of the scheme in April 2015 and has now successfully achieved its first gold star. Secondary school children in Gloucestershire have been challenged to create a radio advert to be played during Dementia Awareness Week.
The challenge was set by the Gloucestershire Black Minority Ethnic (BME) Network for Dementia, a multi-agency organisation which works to improve access to memory assessment and community dementia services for people from BME communities.
The pupils were asked to design a radio advert, lasting up to 40 seconds, targeting people in Gloucestershire, particularly those who are worried about their memory or someone else’s memory.
2gether NHS Foundation Trust is pleased to announce that it has appointed a new non-executive director, Marcia Gallagher.
Marcia brings with her 40 years’ NHS service and her experience both as a qualified accountant and the holder of a number of senior functioning roles in the NHS. Marcia, who lives in Lydbrook, in the Forest of Dean, worked in both commissioner and provider organisations in Gloucestershire, Herefordshire and the West Midlands. Marcia has had both a professional and personal involvement with mental health services, something that has helped drive her decision to become involved with 2gether. Throughout her career she has undertaken a variety of voluntary work, something she has continued into retirement with her work with the Royal Voluntary Service.
She is keen to use the skills she has developed during her career in her role as non-executive director and Chair of the Audit Committee for the Trust. Marcia recognises the challenges that the Trust faces going forward and feels her experience will be valuable in guiding the Trust through this. A new base for the teams who treat and support people with mental illnesses, learning disabilities, dementia and related conditions has opened in the Forest of Dean.
The teams in the Forest have, in the past year, provided an average of more than 1,260 appointments each month.
People who access 2gether’s services are generally referred by their GP or other health professionals, however certain services can be accessed directly.
Let’s Talk, which can be contacted on 0800 073 2200 by anyone experiencing conditions such as stress, anxiety and depression.
Managing Memory, which can be contacted on 0800 694 8800 by anyone worried about memory, people with dementia and carers of people with dementia. As part of the South West Region Mental Health Transport Review, Gloucestershire County Council is seeking the views of people who have been transported under the Mental Heath Act (MHA). 2gether NHS Foundation Trust and Gloucestershire Young Carers have launched a Triangle of Care for young carers.
The Triangle of Care is a national scheme, introduced by the Carers' Trust, which brings together carers, service users and professionals. Young carer Kira, aged 18, said she was very pleased young carers had their own Triangle of Care. People in Gloucestershire and Herefordshire are being asked for their views on local NHS mental health community services. The survey for 2gether NHS Foundation Trust (2gether) is part of the national programme led by the Care Quality Commission (CQC) and is being carried out by Quality Health, an independent research organisation. The independent annual survey is an important way for the Trust to seek the views of people in their care. It seeks to find out what service users think about different aspects of the care they receive from the Trust.
The survey is used alongside a number of measures of Trust performance of patient and carer experience. The survey is sent out to a random selection of service users and is used by the Department of Health, the Care Quality Commission, local Commissioners and others to assess how well the Trust is meeting the needs of patients.
Taster sessions are being held in the Forest of Dean for anyone interested in signing up for courses with the Severn and Wye Recovery College. The Severn and Wye Recovery College is provided by 2gether NHS Foundation Trust with other partners. NHS clinical staff and social care professionals in Gloucestershire are teaming up to improve the way they share patient information. Joining Up Your Information is a project led by family doctors, hospitals, community and mental health trusts and Gloucestershire County Council. Historically, different NHS and social care organisations have developed a range of specialised electronic systems to store patient records.
The new system will only be accessed by authorised clinical staff and social care professionals through their existing record systems. The project team will shortly be sending a letter and information leaflet to every patient aged 16 and over registered with a Gloucestershire GP practice. These will explain the benefits of better information sharing and the importance of more joined up care across the NHS and social care sectors. 2gether NHS Foundation Trust has been using Gloucestershire’s museums to provide a different environment for art psychotherapy sessions for people experiencing mental health issues.
The groups have been run by Art Psychotherapists from the trust’s Complex Psychological Interventions teams, and are an innovative approach to art psychotherapy for adults with severe and enduring mental illness. One group, catering for 18-25-year-olds, has recently finished running at Gloucester City Museum, while another, for adults of all ages, has got underway at The Museum in the Park, Stroud.
Overall, participants in the Gloucester City Museums group felt a significant decrease in the severity of problems they experienced and an increase in their self-esteem.
The hard work and dedication of mental health and social care staff from all across 2gether NHS Foundation Trust has been recognised at an annual awards ceremony. The ninth Recognising Outstanding Service and Contribution Awards (ROSCAs) took place at Hatherley Manor Hotel, near Gloucester, this evening (26 February). About 140 staff, volunteers, service users and carers from across Gloucestershire and Herefordshire attended and awards were presented in 10 categories. In addition, long service awards were presented to staff who have given either 20 or 30 years’ dedication to the NHS. The ROSCAs judging panel consisted of service users, trust governors, trade unions and sponsors. Mary Keating, Dementia Education Community and Service Development Lead, Charlton Lane, Cheltenham. A nurse from Gloucestershire has created and written a play about dementia which is being performed at a Tewkesbury theatre next month. Mary Keating, Community and Service Development Lead, Dementia and Education Training Team, 2gether NHS Foundation Trust, has dedicated much of her career to working with older people, particularly those with dementia. The play tells the story of Al, a 70-year-old gentleman who receive a diagnosis of dementia. The children from Tewkesbury School have been encouraged to be innovative and creative with the script, under the supervision of Miss Nicola Rope and Mr James Anthlett, Head of Drama, where they have been able to produce a remarkable piece of work. The play has been sponsored by the Barnwood Trust, Severn Vale Housing, Gloucestershire CCG , and Gloucestershire County Council. Mary has worked for the mental  health services in Gloucester for more than 27 years, predominantly working with older people and, in particular, people with dementia.
Please note, the play is not suitable for children under 12 years’ old and, due to the nature of one or two scenes, may not be suitable for people who have been diagnosed with dementia. A record number of nominations have been received for 2gether’s latest Recognising Outstanding Service and Contribution Awards (ROSCAs).
More than 200 nominations were received for the annual awards, which recognise the dedication of the staff and volunteers who work in mental and social healthcare across Gloucestershire and Herefordshire.
A judging panel, consisting of service users, carers, public governors, trust management, sponsors and staff representatives, faced the difficult challenge of whittling the list down to a shortlist of just three nominations for each category.
The nominees will be honoured at an awards ceremony on Friday 26 February, alongside their colleagues who have achieved 20 or 30 years’ NHS service. The 2015 ROSCAs are being sponsored by Alpha Colour Printers, West of England Academic Health Science Network (WEAHSN), Midcounties Co-operative and Gloucestershire Young Carers.
A new mental health awareness scenario has been added to the courses on offer at SkillZONE, Gloucestershire’s safety education centre.
This week is Children’s Mental Health Week, so 2gether NHS Foundation Trust and SkillZONE are pleased to be able to launch this module for young people across Gloucestershire, to raise awareness of positive mental health and wellbeing.
SkillZONE, in Tuffley Lane, Gloucester, is a state-of-the-art life-size village, which provides a fully interactive learning environment to teach people of all ages how to recognise dangerous situations and stay safe. Kathryn Charlesworth, a social inclusion development worker with 2gether, has been involved in putting the new scenario together. The scenario, which is optional for schools visiting SkillZONE, looks at each of the five ways of well-being and uses an activity to raise awareness of them. Teachers can then continue the activities back at their schools, thanks to a special resources box created by Kathryn and her team. Two Recovery Inpatient Units in Cheltenham have been recognised for the high standards of care they provide.
The Laurel House and Honeybourne Recovery Inpatient Units are run by 2gether NHS Foundation Trust and are used by adults with a serious mental illness, predominantly psychosis. Helen Elliott, matron for both units, said she was extremely pleased with the results of the assessment.
The units, which are both situated in Swindon Road, aim to work with service users to help them establish the best possible quality of life and enable them to live as independently as their individual abilities allow. The application for AIMS accreditation includes service users and family carers checking progress against a number of care and organisational standards. AIMS was set up by the Royal College of Psychiatrists to identify and acknowledge services with high standards of organisation and care, and with a view to helping other healthcare providers to achieve these standards. A range of free courses to support people who are dealing with anxiety, stress and depression are being offered throughout Herefordshire. Let’s Talk is an Improving Access to Psychological Therapy (IAPT) service and is part of 2gether NHS Foundation Trust. The courses run for four to eight weeks, are run by friendly and professional staff, and are open to anyone who wishes to use them.
2gether NHS Foundation Trust is encouraging people across Gloucestershire and Herefordshire to speak openly about mental health.
The Trust is supporting national Time to Talk Day on Thursday 4 February, which aims to encourage people all over the country to take five minutes to have a conversation about mental health. The conversations can take place anywhere and with anyone, such as with friends, family, work colleagues, fellow students, and in workplaces, schools, colleges, in the community and even online. Dominika Lipska-Rosecka, Social Inclusion Team Manager with 2gether, explained why the trust is supporting Time To Talk. Events will be taking place across the UK to mark the day and the trust is supporting several in Gloucestershire and Herefordshire. Cheltenham Borough Council Community Engagement team is holding Time to Talk sessions, supported by the Trust, at two of their Cheltenham Our Place hubs. We’ll also be assisting with stands set up by Stroud District Council and Gloucestershire County Council for their employees.
We’ll be facilitating a workshop for Cheltenham Borough Council employees on tackling stigma, as well as supporting them in holding a tea and talk event for their staff.
The Care Quality Commission has today published its report detailing the findings of the Comprehensive Inspection of our services, which took place in late October last year.
The event is being organised by the Governors of 2gether NHS Foundation Trust and takes place on national Time to Talk Day, which is Thursday, 4 February.


Gloucestershire College, in Llanthony Road, Gloucester, will be hosting the event, which runs from 5pm to 7.30pm. Visitors will be able to find out more about the services provided locally by 2gether NHS Foundation Trust and its partner agencies, and information about how to access them. As well as being able to ask questions about the Trust’s work, there will be an opportunity to make suggestions about how the Trust can support the mental health and well-being of young people in the local area. Secondary school children in Gloucestershire are being challenged to create a radio advert to be played during Dementia Awareness Week. The challenge has been set by the Gloucestershire Black Minority Ethnic (BME) Network for Dementia, a multi-agency organisation which works to improve access to memory assessment and community dementia services for people from BME communities. The pupils are being asked to design a radio advert, lasting up to 40 seconds, targeting people in Gloucestershire, particularly those who are worried about their memory or someone else’s memory. The winning advert will be played on Gloucester FM, on 96.6 FM, during Dementia Awareness Week, which runs from 15-21 May. Kathy Holmes, the Engagement and Involvement Lead for Managing Memory 2gether, part of the 2gether NHS Foundation Trust, has been involved in setting the challenge. The closing date for entries to the competition is Thursday 17 March and it is open to pupils from all Gloucestershire secondary schools. Papers for the meeting can be requested by contacting Anna Hilditch, Assistant Trust Secretary on 01452 894165. Experts are encouraging everyone to safeguard their mental health and wellbeing this Christmas. People with learning disabilities in Gloucestershire and Herefordshire are being encouraged to get their flu vaccination if they’ve been contacted by their GP.
The vaccination is free to anyone that needs it and is available at local GP surgeries and at some pharmacists.
More than 50 volunteers are registered with 2gether, and they work to enhance and improve the services the Trust provides. To express an interest in volunteering with the Trust, please contact the Social Inclusion Team on 01452 894200.
The Severn & Wye Recovery College provides free courses across Gloucestershire at a variety of venues, and is open to anyone who has recently been treated or is being treated by 2gether NHS Foundation Trust for a mental health condition.
Taster days for forthcoming courses are being held in Hester’s Way, Cheltenham on December 7 and 14. Patrick Senior, Staff Side Chair and Shaun Clee, Chief Executive have signed the Talent for Care and Widening Participation Partnership Pledge at this month’s JNCC meeting. Rodborough Parish Council has become the latest organisation to join a Gloucestershire-wide campaign to tackle stigma and discrimination experienced by people with mental health conditions. The event was part of an ongoing programme of sessions with businesses and organisations across Gloucestershire, aimed at explaining the prevalence of mental health problems and how help and support is provided. Kathryn Charlesworth, of 2gether NHS Foundation Trust, met the council alongside Dan Beale-Cox, who is co-chair of the countywide Tackling Stigma group. To read more about the Tackling Stigma campaign and find out which other organisations are involved, click here. If you are experiencing a mental health issue, or you have concerns about someone who is, please speak to your GP. The Care Quality Commission (CQC) is the independent health and adult social care regulator in England.
Local health and care staff are the first to step up and have their flu jabs in order to stay well this winter and protect their patients and loved ones from the virus. They have also joined forces this year to urge at risk groups and frontline health and care colleagues to take up the free flu vaccination and stay well this winter. Each winter hundreds of thousands of people across the country see their GP and tens of thousands are hospitalised because of influenza (flu), which could be prevented by having the flu vaccine once a year.
This year’s Herefordshire flu vaccination campaign has been launched jointly by Herefordshire Clinical Commissioning Group (HCCG), Wye Valley NHS Trust (WVT), Public Health, Herefordshire Council, 2gether NHS Foundation Trust, and West Midlands Ambulance Service (WMAS), as part of the national seasonal flu vaccination campaign.
Around 1000 front line staff from HCCG, WVT, Public Health, Herefordshire Council, 2gether and WMAS, so far have had or have booked their flu vaccination this year to help to protect patients and service users. For most healthy people, flu is an unpleasant but usually self-limiting disease with recovery taking up to a week. Members of the public who would like to show their gratitude to NHS staff who have cared for a loved one are being invited to a special thanksgiving service at Gloucester Cathedral. NHS organisations across Gloucestershire have linked up to stage the event at Gloucester Cathedral on Wednesday 21st October at 5.30pm. The service, to be dedicated to all NHS staff (both clinical and non-clinical) past or present, is free and open to the public. Readings will be made by staff on behalf of NHS organisations in the county and a poem, written by Clinical Psychologist Andrew Champion, will also be read out as part of the service.
We have recently launched the Triangle of Care scheme for young carers and we will now be working to embed the principles of the scheme across our community teams, with the aim of achieving our next star as soon as possible. We hope that it demonstrates to our service users, families and communities, that we hold carers and the role that they play in the highest regard.
We would not be in this position if colleagues across the Trust had not got behind the scheme so wholeheartedly.
It aims to promote safety and recovery for people with mental health issues, and encourage their wellbeing by including and supporting their carers. These include feedback provided to our local Patient Liaison Services (PALS), the Trust’s Service Experience Team and local surveys that can be undertaken around the Trust sites and within the community. Anyone interested in finding out more can attend the sessions at the Belle Vue Centre, in Cinderford, on April 18 and 25 from 2 to 4.30pm. The courses offered teach participants about mental health conditions, treatments, the best ingredients for recovery, and how to plan for the future. Students should either be a current 2gether service user or should have recently been discharged from 2gether services.
It will make an agreed set of information from each organisation immediately available to health and care professionals from other local organisations using a secure, electronic system.
This means important information held in one part of the health and social care system might not be readily available to doctors, nurses and other health and social care professionals in others.
NHS Gloucestershire Clinical Commissioning Group helped fund the Gloucester group through their Cultural Commissioning programme.
We work with the exhibits and objects within the museum, as well as art-making, using them as a stimulus for self-exploration, to enable people to reflect on their feelings and experiences. Following this, it then explores how he adjusts and changes as he grapples with dementia, and how his relationships with family, friends and his community are severely tested.
As well as raising awareness of dementia and tackling the discrimination against people within our communities who have dementia, the play can also be used as an educational resource. She has been relentless in her work to improve the quality of life for people with dementia. Accreditation is only granted following a visit from Royal College of Psychiatrist assessors, who check current practice within the Unit. The courses provide education on topics related to stress, anxiety and depression, and cover practical techniques and tips to help people learn to manage their mood. 2gether is holding a number of events in the two counties to provide support, information and encouragement for those who want to start a conversation. The table below details the rating that the CQC has given each of these 10 service areas across each of the five domains. We are able to deliver this level of service due to our talented, skilled, committed and caring staff as well as the collaboration and support of our commissioners and partners.
Don’t take on every responsibility, such as shopping, cooking and coordinating engagements just because you always do. List making is an age old tactic, but it really works, and don’t leave everything until the last minute.
Alcohol can make you act in a way you might regret, and it can also have a depressive affect. Gifts are not the most important part of Christmas and you may be storing up problems for the future if you get yourself into debt. If the family is getting too much, take a break, a spot of meditation or a walk in fresh air will help. Loneliness can be a particular issue over Christmas, so try and make sure no one spends the whole time without visitors or company. A good sleep pattern can help you maintain good mental health and make you feel more alert and able to cope better with stress.
Paul Winterbottom is a Consultant Psychiatrist (Learning Disabilities) and Medical Director at 2gether NHS Foundation Trust.
If you care for someone with learning disabilities, please remind them to get the free flu jab”. They also help in a variety of ways, including sitting on interview panels when staff are being recruited, advising on trust policies, helping to provide staff training, and participating in focus groups to provide feedback on important issues the Trust is working on, including its long term strategies. The college is also open to carers and family members who wish to learn more about mental illness and how to support an individual with their recovery.
Working with our staff side representatives, the pledge emphasises our continued commitment to provide opportunities for support colleagues to learn on the job, develop their skills and advance their careers”. At the same time we learnt how effective it can be to take simple measures to tackle stigma and discrimination wherever it is encountered. However, people in at risk groups are at particular risk from the more serious effects of flu. The nasal spray is a quick, easy and painless way to help prevent pre-school age children catching flu and the vaccine also helps to reduce the spread of flu to those who are more vulnerable. A Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side.
Carers not only need our full support, they are also experts in their own right who should be fully integrated into the care process. We look forward to utilising her skills and experience, which will stand her in good stead as a non-executive director. Your feedback will help us understand what changes we need to make so we can continue to improve local mental health community services”.
The play attempts an honest portrayal of explaining the darker side of dementia, while at the same time using gentle humour and conveying hope. As well as her work for the trust, she has also published articles in the UK and abroad on dementia leadership, and has spoken at conferences on specialism and leadership in dementia.
We want to encourage people to talk about their condition and to feel that they can seek help when they need to.
This can lead to a delay in early assessment and access to potential support and treatment options. Most people with Moebius Syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions.
Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present. A People with Moebius Syndrome are of normal intelligence, although their lack of facial expression is often taken to be due to dullness or unfriendliness.It is estimated that there are only between 5,000 to 10,000 cases of Moebius syndrome worldwide. A "There is no substitute for a loving, supportive family A­ whether that family is biological, or our worldwide Moebius Family.
We encourage you to proudly wear purple, and do some of your own research to educate yourself and others about Moebius Syndrome.


We appreciate your support and look forward to the biggest Moebius Syndrome Awareness day ever!A Click here to download a pdf copy of the press release. Just click here to order directly from Fresh Printz, the official provider of MSAD clothing. 24th, make sure to wear your shirt with pride, telling everyone you know about Moebius and the special day honoring those with the condition. This was the day our lives were put on course -part of the same journey, with Paul Mobius as the Pilot, we the passengers.The realization that word around Moebius Syndrome has spread brings a smile upon my face. The diagnoses were dreadful, parents were sent home without any hope, advice or information. Who could survive against these odds?What was left for parents to hold onto but Prayer, love and a Godly miracle! With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. In hindsight, any challenge or disability to me means loving that person unconditionally, so let us step up and spread the awareness. Our appeal is simple a€“ in support of those living with Moebius Syndrome, wear purple on 24 January and share your knowledge about this disorder. 24 January is now also a day of Celebration in the Life of those living with Moebius Syndrome.
Thank you to all who have made this day possible and for giving our children a new meaning to life.- Kay Von WillinghMoebius Syndrome Awareness Day (MSAD) is important to me for many reasons. Like many of the other families, we learned of a new syndrome that day that very few had ever heard of. I remember the call from my sister, Stacey, telling me Dakotah was born and that something was wrong. Thankfully, I found the Many Faces of Moebius Syndrome and Moebius Syndrome Foundation websites. The websites have brought many families together through love, support and sharing of personal knowledge and experiences, however, with very little information available to families otherwise this day is important, and much needed, to give a voice to the syndrome and the families who live it each and every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding to those around them, and within the medical community as well.- Andrea (Sweetwood) SmithWhen I was asked what MSAD means to me. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections. I think of my friend Tim Smith, who has been informing masses of people about Moebius Syndrome for years. MSAD 2011 meant (to me) that a common goal within the Moebius community had finally been met.
God bless!- David MoffittThe media have made a number of illnesses well known to the public such as cancer, mental health illnesses like Bipolar Disorder and Schizophrenia and that is just to name a few.
Though in most cases Moebius Syndrome isn't life threatening it is still a syndrome that affects people all around the world emotionally and physically.Every day people usually have no clue what Moebius Syndrome is, so sufferers with severe facial paralysis sometimes will get looked at strangely while innocently walking down the street, going about their day.
Often teenagers in high school will get bullied because having Moebius Syndrome makes them look different from others.
This can have a serious affect on people, making them feel even more anxious about their appearance. It is hard when others dona€™t understand the syndrome; they might assume a sufferer is moody or unfriendly by the appearance of their face when this is not the case. Most of the time it is really hard to let people in because it can be awkward breaking the ice, not knowing quite how to explain yourself to other people so that they can get a better understanding of the syndrome.
And when you do explain yourself to someone you have to explain yourself to someone else and this can be tiring.Having a Moebius Syndrome Awareness day will benefit the public so much, its not a common syndrome so putting it out there to the world will just make people with the syndromes life a little easier. That way the world is educated and familiar with it and hopefully they will be able to recognize someone with Moebius Syndrome.
Hopefully they will be able to realize that people with Moebius Syndrome and perfectly intelligent and intellectual, and that they lead normal lives. This will also benefit Doctors who will be able to diagnose new born babies and infants quicker.Having an awareness day will also be great for people with the syndrome who are unaware that there is a Moebius Syndrome website and group on Facebook that they can go to if they need some support. This can be a very positive experience as they can interact and meet up with others with the syndrome; this can help people feel less isolated.
Finally the more people that know about the syndrome the better it will be to find what causes Moebius Syndrome as this has been yet to be discovered.- Loriana Sofia FirthI was surprised by how much Jasper got out of MSAD.
As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally. The pride in his face from being the MFMS poster boy for the day was incredible- it dawned on me then that MSAD was important for him because it gave him the opportunity to celebrate who he is BECAUSE of Moebius syndrome not despite it. I have always tried to ensure that Jasper never feels as though he is deficient or that he needs 'fixing', MSAD helped to consolidate this.'- Lauren BroadhurstA few months ago I was watching an old episode of ER where a young boy with Down Syndrome is brought into the emergency room.
Immediately the TV doctor makes a decision on how his patient should be treated after considering a few risk factors involved in having Down Syndrome. It's mostly likely that if the situation were real the doctor wouldn't even know what Moebius Syndrome is, never mind knowing how to treat someone with it. I believe not only could a Moebius Syndrome Awareness Day teach doctors how to treat those with Moebius medically, it would teach others how to treat those affected by Moebius socially as well.- Gavin FoucheThe 1st Annual Moebius Syndrome Awareness Day was an invaluable day for our family. I believe that with the HUGE effort of the entire Moebius Syndrome community, MSAD allowed us to educate countless people across the world, including our family and friends that were unaware of exactly what Zaydena€™s diagnosis meant. Parents, relatives, friends and fellow Moebians made MSAD 2011 a huge success through their hard work and creativity. Leta€™s make January 24, 2012 known throughout the world so parents and health care providers can make informed decisions when a diagnosis of Moebius Syndrome is made.- Holly WilliamsA  What does Moebius Syndrome mean to me?
When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either). At the same time, having Moebius Syndrome has allowed me to get to know some wonderful people, people whom I never would have known otherwisea€”of course I speak of the Moebius Community. And I think having to overcome the obstacles that I and all of us face, has made me tougher, a bit more resilient, than I would have been otherwise.
We understand achieving despite obstacles, we understand climbing mountains, striving, trying. But the entire Moebius community and what it achieves daily showsa€”life sure is worth living.- Kevin Smant___________________________________________________________________________________________________________A Please consider joining us on Facebook using the icon above.
Each time we get a new "Like" we are spreading awareness about moebius syndrome one step further. As we become better known people start to see us for our commonalities not our differences.
More doors are opened for us and we are able to do more towards our mission goal of "Creating a better tomorrow for ourselves and our children through education and public awareness!" We have to keep going and growing. For Moebius Syndrome Awareness Day 2012 we reached out to other rare disease groups and told them about our Awareness Day. Essentially saying, a€?How can we help?a€?Many Rare Disease Groups have their own Awareness Days. Moebius Syndrome Awareness Day and the Many Faces of Moebius Syndrome would not have become successful without the support and friendship of NORD, Rare Connect, The Global Genes Project, and many other Rare Disease groups around the world. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! Project team members are currently building the tools for a much needed program called 'RARE Meet Up's'. We are currently looking for rare disease advocates to contact us if they are interested in participating in a 'RARE Meet Up' group in their local area. We will continue through 2012 with the goal of connecting 7000 RARE families with 7,000 new champions for the cause. And Global Genes Project team members wish The Many Faces of Moebius Syndrome much success on your awareness day on January 24, 2012! 28 in other years) the world celebrates Rare Disease Day, to promote awareness of rare diseases as a public health challenge that cannot be ignored. Rare Disease Day 2011 touched minds, hearts and souls across the nation and 2012 that momentum continues. Advocacy days, like Rare Disease and the Moebius Syndrome Awareness Day, are key components to spreading messages of awareness, advocacy, and hope both within the community and to the public. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare a€?orphana€? diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Since 1983, NORD has worked closely with our patient organization members, which now number over 160. Senate adopted by unanimous consent a resolution designating February 28, 2011, Rare Disease Day across the U.S.
Thanks to an amazing grassroots campaign, proclamations were obtained in 48 states and similar documents were obtained in the two other states. Other successes this past year were obtaining more than 860 partners and ambassadors who represent patients and their families, patient organizations, government entities, medical or other professional societies, or companies that support the theme of the day. These individuals and organizations contributed to a media and social media blitz where stories, pictures, and videos were shared. Rare Disease Day was also an opportunity to promote the Rare Disease Congressional Caucus that will help focus attention on rare diseases and related needs, such as research.
Every story that was shared, press release posted, or pin worn was an opportunity to raise awareness and teach others.
We will rely on the mobilizing capacity of our advocates and networks across the country as we truly cannot do it alone. NORD wishes The Many Faces of Moebius Syndrome and it's partners the best of luck on your awareness day; all of us together have an opportunity to unite our voices for the common themes of awareness, education, research, and hope!
August 8 2015 Official 2015 Moebius Syndrome Awareness Day Page Our 2014-2015 Moebiuis Syndrome Family Holiday HeroesGallery 2 Moebius Syndrome Awareness Day 2015 Video Gallery Smiling with our Hearts upon the World! Most people with Moebius Syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions. A "There is no substitute for a loving, supportive family A­ whether that family is biological, or our worldwide Moebius Family.
I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections.
When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either).
If you haven't already done so please click on the image above and like our Facebook page.



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