PCA
Welcome to this January 2016 edition of the PCA Support Group Newsletter.
As always, we hope that the content of the newsletter is of interest to our members but remain aware of the difficulties in producing information which meets everyone’s needs and in a style which they are comfortable to embrace. Please do let us have any suggestions regarding the format of the newsletter and indeed any contributions you wish to make.
This newsletter can be produced in a font and format which people with PCA may find easier to read. Please let Jill
Walton know if you would like to receive a copy. It will also be available as an audio recording, accessible via the website.
For those of you who receive the newsletter as hard copy, we continue to make use of the ‘Articles for the Blind – Free Postage
Scheme’ and assume that newsletters are successfully reaching the intended recipients! Having access to this scheme makes a considerable saving to the postage costs incurred by the MEF, and may we please remind you that if you are able to receive the newsletter electronically, we are very happy to provide it via this means.
As many of you are aware, the cost of operating and running the PCA support group has been primarily funded to date through the Myrtle Ellis Fund: a funding stream which was generously initiated by the family of
Myrtle Ellis when she was diagnosed with
PCA in 2007.
We are extremely grateful to the family and to the many fundraisers who have subsequently contributed to keep the fund viable. We currently find ourselves in a position whereby we facilitate 5 disease specific support groups in affiliation to the Dementia Research Centre here at UCL, and after careful consideration and involvement with the Ellis family, believe it is time to re-launch the support group network with a new branding and remit which better captures our extended provision and allows us potential for ongoing growth and development. As such, on Feb 29 2016 – a rare day in itself - the new Rare Dementia
Support initiative will be officially launched.
Rare Dementia Support services will be funded by the newly amalgamated Rare
Dementia Fund. The Fund is being established within The National Brain Appeal as was the case with the Myrtle Ellis Fund. It will provide funding for the Dementia Research Centre
MEF
The PCA Support Group is funded and supported by the Rare Dementia Fund, as part of The National
Brain Appeal (Charity number 290173). For more information on the work of the Fund or to make your own contribution to the running costs of the PCA Support Group, please contact The National
Brain Appeal on 020 3448 4724. Alternatively visit https://campaign.justgiving.com/charity/tnba/ rare-dementia-support
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at The National Hospital of Neurology and
Neurosurgery, to continue providing support by way of meetings, newsletters, telephone contact networks, websites and access to advice and information for patients and carers dealing with one of the following types of rare dementia:
• Frontotemporal Dementia (FTD)
• Posterior Cortical Atrophy (PCA)
• Familial Alzheimer’s Disease (FAD)
• Familial Frontotemporal Dementia (fFTD)
• Primary Progressive Aphasia (PPA)
It costs over £35,000 a year to provide current levels of support for the five rare dementias - this includes 13 London and 50 regional meetings a year, a part-time support nurse co-ordinator and all associated expenses such as catering, marketing and venue hire. Over 2,000 people (UK and overseas) are currently on support group databases receiving emails and newsletters with around 1,000 attendees across all the meetings. In addition, travel and accommodation bursaries are available to help patients and carers attend the meetings.
In essence and on a practical level, nothing will change for you the service users. At an organisational and strategic level, Rare
Dementia Support will allow us opportunities for service development and fundraising which , we believe, will enable us to better meet the needs of people diagnosed with rare or atypical dementia diagnoses.
May I take this opportunity to invite you to the forthcoming full support group meeting on Friday February 5 2016. The venue for this meeting is Wilkins Haldane Room on the
UCL Gower St site, WC1E 6BT. The meeting is scheduled from 11am -2pm, with coffee available from 10.30am and lunch provided.
The theme of this meeting will be ‘Creativity in PCA’ and we are pleased to welcome a range of presenters to share details of their work as well as engaging with us on an interactive level too:
Simon Ball a film maker/animator who will be working on the ‘Am I the right way up?’ balance project here at UCL
Susannah Howard has described some aspects of her work in an article in this newsletter. She will join us to talk further about her poetry and performance approach
Pam Turpin is currently undertaking a study looking at the environmental challenges faced by people living with PCA and their caregivers and will be holding fous groups at this meeting for people who are keen to contribute their perspective.
Amelia Carton is a research assistant at the Dementia Research Centre here at UCL and will describe the recent ‘Profiles in
Paint’ project where people with PCA and other rare dementia diagnoses produced a still life painting from the same objects, in collaboration with the visual artist Charlie
Harrison.
I look forward to seeing you at this meeting or indeed being in contact with you in whatever capacity is most appropriate.
Jill Walton

Fri February 5 2016: agenda as above
Fri June 10 2016: agenda tbc
The venue for these meetings is Wilkins
Haldane Room which is located in the
Wilkins Building, UCL, Gower St, London
WC1E 6BT. The meeting is scheduled from
11am-2pm, with coffee available from
10.30am and lunch provided.
In addition to the full support group meetings listed above, and by request of support group members, we also facilitate
‘carers only’ meetings for carers, family and friends of people affected by a rare dementia diagnosis. These meetings aim to provide an environment whereby sensitive discussions can take place within the understanding of a professionally facilitated peer group. The venue for these meetings is the Front Quadrangle Events venue, which is the white marquee type structure inside the main university quadrangle at the Gower St site, WC1N 6BT. The meetings run from 11am until 2pm with coffee available from
10.30am and lunch provided.
Carer meetings are currently scheduled for :
July 7 2016: Medical –Legal Issues
James Malby is a solicitor specialising in
Private Client law and is experienced in the preparation of Lasting Powers of Attorney and Advance Statements. He advises on all aspects of their use, benefits, registration and other issues that often arise.
James will give a presentation to help dispel some myths and outline the benefits of making these documents and the processes involved.
More details nearer the time.
Minutes : The minutes of the UCL meetings as recorded by Celia Heath, a support group member, are published at the back of the newsletter.
Regional meetings provide an informal opportunity to meet other people affected by PCA. Regional meetings are now taking place in Oxfordshire/Central regions,
Berkshire, Cambridge, Chichester, Kent and
Hertfordshire and Scotland.
Berkshire Regional meetings are coordinated by Helen Shepherd. Please email Helen on Helen@shepherdcharles.
com for more information. These meetings are held at Barkham COAMHS, Wokingham
Hospital. These meetings are organised in conjunction with the ‘Young People With
Dementia’ Berkshire West group.
Hertfordshire Regional meetings are coordinated by Di Garfield. Please contact
Di on myrtleellisfund@outlook.com
for more information.
Kent Regional Support Group Meetings are coordinated by Betty Fernee. Please contact Betty on betfernee@aol.com
for more information.
Chichester Regional Support Group
Meetings are coordinated by Fiona
Chabaane. Please contact Fiona on or fchaabane@hotmail.co.uk
for more information.
Please contact Jill for more information about any of these meetings.
Disclaimer:
Please note that you assume full responsibility and risk when attending support group meetings, and also in the use of the information contained on our website, in our newsletters and at support group meetings.

Wilkins Main/Front Quadrangle, University College London, Gower Street, London WC1E 6BT
The closest underground stations to UCL are
Euston Square on the Circle, Metropolitan and
Hammersmith and City Lines, Goodge Street on the Northern Line and Warren Street on the
Northern and Victoria Lines.
London Underground Infoline: 020 7222 1234.
London Underground - Did you know that you can ring London Underground Customer
Services on 0845 330 9880 the day before you are due to use a service? They arrange for someone to meet you in the entrance area of the station at which your journey begins, accompany you down to the platform and onto your train. They then radio ahead to an official at the relevant station to assist with any required platform changes or take you up to ground level.
UCL’s Gower Street site is served by many
Transport for London bus routes. Buses travelling from north to south stop in Gower Street, immediately outside UCL’s main gate, while those travelling from south to north stop outside Warren
Street station, about five minutes’ walk from UCL.
Services to these stops include route numbers:
10, 14, 24, 29, 73, 134, 390.
London Buses Infoline: 020 7222 1234
Disabled Persons Railcard scheme. A person is eligible for the scheme either as a result of being registered as having a visual impairment or by virtue of being in receipt of attendance allowance or disability living allowance/personal independence payment. The railcard entitles the holder and a friend to 1/3 off train fares.
Passenger assistance is also available to rail users. Visit www.disabledpersons-railcard.co.uk
Disabled Persons Railcard scheme. A person is eligible for the scheme either as a result of being registered as having a visual impairment or by virtue of being in receipt of attendance allowance or disability living allowance/personal independence payment. The railcard entitles the holder and a friend to 1/3 off train fares.
Passenger assistance is also available to rail users. Visit www.disabledpersons-railcard.co.uk
UCL Helpline 020 7974 4651 or 020 7974 4655
(Staffed Monday -Friday 9.00 am to 5.00pm)
We are very conscious that travelling to and around London can seem a daunting prospect.
Be aware that pre-booked travel is generally cheaper than tickets purchased on the day and that the Myrtle Ellis Fund provides help with travel costs where required. Contact Jill for further details.
Disabled Persons Railcard scheme
A person is eligible for the scheme either as a result of being registered as having a visual impairment or by virtue of being in receipt of attendance allowance or disability living allowance/personal independence payment. The railcard entitles the holder and a friend to 1/3 off train fares. Passenger assistance is also available to rail users.
Visit www.disabledpersons-railcard.co.uk
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UK supermarkets Iceland, Asda, Morrisons and Waitrose have pledged funds from the new levy on single-use carrier bags to support the construction of a new world class dementia research centre at UCL.
The Dementia Research Institute will bring together researchers from across UCL and UCLH to lead national and international efforts to find effective treatments and improve the lives of those with dementia.
The £350 million project currently has a shortfall in funding of £100 million, and the cash expected to be generated by carrier bag sales from Britain’s food retailers has the potential to bridge much of that gap. Initial calculations indicate the project could raise £20m in the first year, depending on patterns of carrier bag usage under the new system. No overheads are taken from the sums raised, with 100% of funds going to support dementia research.
With the global cost of dementia estimated at more than £500 billion, the disease currently costs the UK economy more than cancer and heart disease combined. However, nearly seven times as much is spent on cancer research as is spent on dementia research by both the government and charities. Today’s announcement follows a collective agreement made by David Cameron and the World
Dementia Council to identify a cure or diseasemodifying therapy for dementia by 2025.
Professor Alan Thompson, Dean of the UCL
Faculty of Brain Sciences, said: “Dementia is the greatest scientific, medical and socio-economic challenge of our times and affects more than
35 million people worldwide. UCL, through its translational neuroscience at Queen Square, can bring the breadth and depth of expertise required to deliver therapeutic advances to this devastating condition. Philanthropy has made a huge difference in tackling global diseases such as cancer and malaria and this unprecedented initiative sees UK retailers acting collaboratively to tackle the tragedy that is dementia and neurodegenerative diseases.”
Dementia is the greatest scientific, medical and socio-economic challenge of our times and affects more than 35 million people worldwide.
UCL, through its translational neuroscience at
Queen Square, can bring the breadth and depth of expertise required to deliver therapeutic advances to this devastating condition.
Professor Nick Fox, Director of the UCL
Dementia Research Centre, said: “Dementia already devastates the lives of far too many families across Britain – we urgently need to find more effective ways to prevent, delay or treat the diseases that cause it. There are real prospects for progress if we bring together the most able scientists and clinicians and support them in their research. This remarkable initiative by some of the UK’s leading supermarkets could make a real difference to accelerating that research.
“We are committed to creating a Dementia
Research Institute at UCL as part of UCL rising to the challenge set by the PM and the G8 and posed by the scourge of dementia. UCL has made this a key priority. UCL can and will bring unmatched research breadth and depth as Europe’s leading neuroscience centre and
Europe’s leading clinical dementia research,
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Dear support group members,
A huge thank you from all of us on the Seeing
What They See team for the response we had to our call for advisory committee members on our ESRC/NIHR funded project looking at cortical dysfunction in Alzheimer’s Disease. We were very pleased to welcome three new members to the committee, all of whom have first hand experience of living with PCA. Our new committee members have already offered us extremely helpful insights and we all look forward to their continued expert involvement in our project as it progresses.
Thanks from the ‘Seeing What They See’ team.
The alumni group is up and running, and welcome to those who would like to join.
Consent to be included in the group is required, and we can provide the appropriate consent document to anyone who may be interested.
We will review the activity of the group over coming months and hope that this provides an additional valuable resource to group members in the meantime. Please contact Hannah Golden h.golden@ucl.ac.uk
for details.
Within the PCA support group, we recognise the need for better information for people affected by younger onset and rare dementias. This includes the provision of appropriate care for people at all stages of their PCA journey.
People do, on occasion make reference to particularly appropriate care packages and/ or providers which they have identified as specifically suitable for younger people with a rarer dementia diagnosis.
If you have used a care provider or care home that you have found to be well suited to the needs of someone with young onset or rare dementia, it would be helpful if you could let us know so we can add these to our resource list. Any other experiences that apply to the provision of care that you would like to share would also be very welcome. As people affected by these diagnoses you have tremendous expertise on living with rare and young onset dementia, and it is this knowledge we hope to share with others.
Whilst we obviously can’t make any direct recommendations per se, people do find it valuable to have a start point or a comparison to relate to.
Please contact Hannah Golden h.golden@ucl.ac.uk
with recommendations and suggestions.
Support group activities remain largely dependent upon the funding generously supported by a plethora of your own fundraising efforts, for which we are extremely grateful.
Thank you to everyone who has made donations to the fund, and do keep an eye on the website http://www.ucl.ac.uk/drc/ pcasupport/fundraising for ongoing fundraising initiatives and efforts!
The second annual global virtual quiz…and save the date for the third!
The annual global virtual quiz has so far raised
£2,400, so a big well done and thank you to all who took part! Next year’s quiz will take place on Saturday November 12 2016 at 8pm GMT.
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Within the support group, we try to provide our members with information about PCA related projects which are of interest. We are keen to emphasize that by making you aware of these projects and of the potential opportunities for involvement we are in no way suggesting any responsibility to take part. For more information about any of the projects listed, feel free to make enquiries, but in no way feel obliged!
The Dementia Research Centre is continuing to foster an emerging partnership with the
College of Optometrists . We are currently issuing invitations to 3 people with PCA to come in to the Dementia Research Centre for a filmed visual assessment session which will include assessment by an optometrist, an ophthalmologist and a neurologist, followed by a brief interview after each assessment to get feedback as to how you felt the experience fared. The process will take around 1.5 hours, and is planned for February 26 2016. The aim is to generate video material for a future optometry training package about PCA/ dementia-related visual dysfunction, and also to conduct a qualitative analysis of the interviews to guide a subsequent consensus meeting where we would discuss which tests are most appropriate for assessing eyesight and
‘brainsight’ in people with PCA.
We are also interested in more general feedback from anyone within the PCA community to describe or comment on past experiences
(good and bad) of visual assessments to help us provide additional material and quotations for this consensus meeting.
Please contact Jill Walton at jill.walton@ucl.
ac.uk or 07592 540 555 in the first instance.
Susanna Howard of Living Words will be joining us as a speaker at our meeting on Feb 5th.
Here are a few words from her:
At Living Words we run care and nursing-home artist residencies. We have been doing this since 2007. We work one-to-one with people experiencing a dementia and over several weeks write down their words about how they are feeling. These are then put in to their own
Living Words book, that they keep and share with staff and relatives. The book can help communication between people, as well as help the individual feel heard. We most often work with people who might not be easily understood, or those who have increasingly spoken less and less.
We also create publications, events and performances to help tackle the stigma surrounding dementia, as well as help improve communication between us all.
You can see more about us by looking at our website: www.livingwords.org.uk
2016 sees us working with Dr Seb Crutch from
7 continued overleaf

UCL on a project called WHERE NOW? – and we are actively looking for participants who are experiencing PCA and living in a care or nursing home in London or the South East. It would be great if you have previously taken part in
Dr.Crutch’s research, but this is not essential.
By taking part, individuals will experience 4 sessions with a Living Words writer, and receive a book of their words, collated with them.
Individuals will further have the opportunity for their words to be included in our next performance piece.
One thing we would say is that the people we usually work with are people who might find it hard to communicate – and so you or your loved one does not need to be a ‘good talker’ to take part. In fact we have worked with many people who rarely speak.
‘I can’t tell you how much Dad’s book of words about how he is feeling means to me…I thought this communication would have been beyond him!’ Julie Carroll
‘You listen to me. I don’t feel so mad’ - Pam
‘She got me, the book is me’ - Edna
‘This is like medicine for me’ - Joyce
Anyone with any questions – please feel free to call Living Words’ founder and artistic director
Susanna Howard on 07967502506, or email at info@livingwords.org.uk.
Participation is free, and will take place in Feb/
March 2016.
Pam Turpin, a student at UCL, is currently undertaking a study looking at the environmental challenges faced by people living with PCA and their caregivers. Areas that
Pam is particularly interesting in include: the challenges of finding your way around your home or when you are out and about in the community; are there any everyday tasks you find particularly difficult?; do particular colours help or hinder you?; is balance a problem?; what strategies have helped you cope with everyday life?
If you are willing to take part in the focus group, please contact Jill ( jill.walton@ucl.ac.uk
) and let her know in advance of the meeting.
Alternately, if you would be willing to chat to
Pam on a one to one basis about these issues, please get in touch and Pam directly: it may be possible for her to visit you at home.
For further information about her study, Pam can be contacted at pamturpin@btinternet.com or telephone 07712647504.
Pam will be facilitating a focus group at the next
PCA Support Group meeting on (5th February) to discuss these issues.
We are aware that word finding difficulties and other disturbances of language are commonly reported by people living with PCA. We would be keen to put any speech therapists who have had experience of working with people with PCA in touch with one another to share approaches, interventions and lessons learned about what works for whom. If you have seen a speech therapist to help you with communication problems relating to PCA, please consider sending us their names and contact details so we can ask them whether they might be willing to share their learning with others in their profession. Please contact Seb Crutch: s.crutch@ucl.ac.uk
or 020 3448 3113.
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Hypersexuality is a problem that occurs in
Alzheimer’s disease, however often remains hidden. A study aiming to understand the problems of hypersexuality in Alzheimer’s disease has been set up at Queen Square in collaboration between the Dementia Research
Centre and Department of Uruneurology.
The study seeks to explore the problem of hypersexuality, and its impact on the carer and partner. The study involves filling in a questionnaire and being interviewed about the issue and its impact. In you are interested to learn more about the study, please contact the researcher, Miss Natalie Tayim, at 07490090010 or email at natlie.tayim.12@ucl.ac.uk

A support group member has mentioned an app that may be of interest to our PCA members: ‘I bought my sister a smart phone and installed Familo on it. I’ve given her a new
GiffGaff SIM card for the new phone so that she can carry on using her old phone for phone calls and texts and told her to charge it every night and carry it everywhere. Familo tells me and other family members if the battery drops below 2% and when she leaves home. For instance, I was notified she left home the other evening and walked to her daughters. I’m not convinced she always takes it out with her, so it’s not perfect, but it does take a little of the stress away. It’s a collaborative project between the University of Dresden and Dresden City
Council so it’s free and there are no adverts or efforts to sell you more products. It’s not specifically for dementia but I think it covers most requirements.’ Details available at - https://www.familo.net/en/
David’s wife, Teresa has asked that we let you know the sad news that David died on
Saturday 12 December. David’s two sons and his sister were able to be with him on the
Saturday and he died at 5.22 pm that afternoon, at home, with all his family around him.
The family were in touch with the Queens Square Brain Bank as David is a donor and all is in progress in that respect. David is a longstanding member of the group and will indeed be missed. We extend sincere condolences to Teresa and the family.
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Venue, Attendees and Updates.
1.1 Jill welcomed 75 people including 6 new members. We hope you found the meeting helpful and will join us again in future. We are, as ever, grateful to UCL for the use of this central venue. For future reference, the
Haldane room is relatively small and as usual was very full.
1.2 Tim introduced the film crew, filming for the on-line MOOC course on Rare Dementias, which is due to go out in March. The
Research Project with Optometrists (the subject of 2 past meetings) has reached the evaluation stage.
muscle cramps, fatigue, a runny nose and insomnia. Vivid dreams can be avoided by taking the medication in the morning.
Taking medication at night allows the patient to sleep through any nausea. A slow heart-rate can occur, so the heart rhythm might need to be checked first with a tracing of the heart (ECG). Start medication during a period of normal routine- avoid beginning it at weekends or on holiday.
2.5 Side effects of Memantine include constipation, drowsiness, headache and dizziness.
2. Talk by Dr Chris Lane (Clinical Research
2.1
2.2
2.3
Assistant) and Mandy Haines (Clinical
Nurse Specialist) Medications commonly prescribed in PCA
These are generally divided into 2 broad categories: acetlycholinesterase inhibitors [sometimes abbreviated to AChEI and which include Donepezil/Aricept,
Galantamine and Rivastigmine, and NMDA receptor inhibitors (Memantine). These are treatments for Alzheimer’s disease, which is the commonest cause of PCA
They do not help to improve vision impairment but may lead to some improvement in cognitive function and therefore energy levels and hence build confidence in mild to moderate cases.
Memantine may work for those who cannot tolerate acetylcholinesterase inhibitors.
2.6 Disease modifying treatments. All humans have amyloid protein in the brain: with age, it increases. In PCA caused by
Alzheimer’s disease, very high levels are present. Over time it can reach a level which causes the symptoms we see in PCA. Amyloid is a target for disease modifying treatments.
2.7
2.8
One disease modifying treatment strategy would be to use laboratory constructed antibodies which bind to and remove amyloid protein from the brain. This might not be effective, especially in the later stages. (Lumbar punctures can be used to monitor levels.)
Other targets for treatment may include the production of amyloid and tau deposits.
Anti-inflammatory treatments may also be tried. Multi-drug treatment is also planned.
3 Answers to Questions
Combination therapy is not generally recommended.
3.1 Tau is another ‘clumping protein’, which can become toxic and destroy cells, in addition to amyloid.
2.4 Cholinesterase inhibitors and how they work. Neurons [ brain cells] and therefore the messages transmitted between them decline in PCA. This type of drug boosts the neurotransmitter levels and hence messaging is improved. Side effects include digestive upsets and nausea,
3.2 Regarding problems swallowing tablets.
N.B. it is important to maintain medication levels. Orodispersible tablets do exist, which melt on the tongue. Pharmacists also sell crushers so tablets can be crushed into powder and mixed with yogurt. Not all tablets are effective

when crushed so always check with a pharmacist first.
4.4 a Mood disorders that can be life threatening and can give negative behavioral shift.
3.3 Responses to the medications and side effects vary from patient to patientl. Weight loss is not a typical side-effect and should be discussed with a medical professional.
Any symptom causing concern should be reported to a doctor. Advice regarding regular monitoring/health checks was discussed.
4.4 b Psychoses:-
Delusion
Illusions
= fixed false beliefs leading to illogical behaviours.
Hallucinations = false sensory perceptions with no external stimulus.
= misrepresentations.
3.4 Regeneration of brain cells is not yet possible. Drugs aim to halt the destruction caused by amyloid.
3.5 http://www.alzforum.org/ and www.
medscape.com
give information on the state of drug research. See also the “Rare
Dementia Support” article in the September
Newsletter.
Assessment is subjective based on one’s own mental state versus the patient’s.
5.1 The diagnosis of dementia is also with the aim of getting helpful treatment and being precise about PCA.
Not all people with dementia patients are seen by psychiatrists. The visual effects may come their way.
4.1 Robert Howard: The Psychiatry of PCA
Psychiatrists are MD’s with 8 years of extra training in Psychiatry. They work in one of
6 specialist areas involving: Adults, Adults and Children, Forensic matters, Medical
Psychotherapy, Learning difficulties and
Old Age. They work mainly with Mental
Health Trusts.
5.2 Delusions specific to PCA include: theft of possessions, belief that their spouse is an impostor since the real one is being unfaithful, failure to recognize features. All of which can lead to a suspicious attitude.
5.3 Practice over the previous 10 years has included use of drugs to relieve symptoms; hence for example, the prescription of anti-psychotic drugs for delusions (as in schizophrenia).
4.2 The distinction in approach between
Psychiatrists and Neurologists mat be described thus: Psychiatrists analyse behavioral patterns with the aim of getting patients better through therapy.
Neurologists analyse and measure physical evidence with a view to helping patients to accept their condition and its progress and to live with this knowledge.
4.3 a) The scope of work of an Old Age
Psychiatrist includes mental health diagnosis and treatment post 65.
5.4 The Domino study shows some evidence
5.5 that anti-psychotics for delusions do work for a time. Cholinesterase inhibitors are stopped when they cease to work.
Conclusions: Little is known about the psychiatry of PCA. Although drugs don’t affect a cure they may allow patients to feel brighter and therefore ‘cope’ for longer.
4.3 b)
4.3
Early onset patients with complex health needs include 50% with dementia and
50% with functional disorders.
c) They work in Community Mental Health
Centers, hospital based units and memory clinics.
4.4 Areas of Treatment include:
Celia Heath October 2015.
DISCLAIMER: The information contained on our website, in our newsletters and at support group meetings is for information purposes only.
You assume full responsibility and risk for the appropriate use of the information contained herein and attendance at any support group meetings.