A full video of the Conference papers will be on our website soon (now available). Meanwhile here is a prÉcis of the proceedings.
Kathy Hunter was welcomed as the Founder and President of the International Rett Syndrome. Lisa Magee said “Kathy is the most inspirational person she has ever met.”
The International motto is "Care today, cure tomorrow".
Care today
On "Care today" Kathy talked about the three new areas of research that will make a difference to the day to day management of the symptoms.
1. Anxiety – a drug is being trialed by Dr Zoghbi (who discovered that Rett Syndrome was explained by mutations on the MeCP2 gene) to help to alleviate the symptoms of anxiety which the girls and women suffer from. Meanwhile, Kathy is using buspar (Buspirone) for Stacie and has found it to be very helpful.
2. Constipation – because the stools are often high in the bowel Kathy has found ……is better than the suppositories that often cause cramping and even more discomfort.
3. French Scientists are working on a drug to help with the breathing difficulties some of the girls with Rett experience. See….
4. Sleep is important for everyone. Many girls do not sleep well. Ensure you get your respite care to cope with the many demands of your daughter’s routine.
Cure tomorrow
Adrian Bird’s research has given great hope to researchers and to parents.
Mike Sullivan explained how the process of methylation affects the development of the nervous system. He explained how gene expression leads to the problems with Rett Syndrome and with Wilm’s tumour in child cancer. Mike explained how the different mutations present the different symptoms and patterns of Rett Syndrome. Mike explained that Prof . Bird’s research is ground breaking but there is still a long way to go before it can be tried on the patients with Rett syndrome. However, it does show there is a possibility of a reversal of the symptoms, especially at an early stage.
Haemish Crawford explained there are many conditions which require scoliosis surgery. It is important to operate at the stage before the spine begins to curve too far to retrieve a successful outcome. It is important to watch for the signs of skeletal curvature and ask your Doctor for a referral to an Orthopaedic specialist. A number of parents commented on the success of the operation for their daughters. He said lung function may be affected for one to two years after the operation.
Daphne Rickson gave an interesting lecture on the use of music therapy for helping with communication by the girls responding by using the calming effect of music. Choice of songs is one way to encourage communication as the girls have definite ideas about which songs they prefer.
The Conference videos will be posted on the website within the next month so everyone can enjoy the complete lecture by each of these outstanding speakers.
Bios of the conference speakers
KATHY HUNTER
Kathy is the Founder and President of the International Rett Association in Washington DC. Stacey, Kathy and Scott’s daughter was the 36th girl in the world to be diagnosed with Rett Syndrome. Today Kathy has seen over 1000 girls. From working from her kitchen table at home, Rett Syndrome is now studied in so many countries and there are laboratories in so many universities all over the world. Kathy’s devotion to the task has been superhuman. The reprint of her book just been released and we are all looking forward to this new edition which we know takes time and energy.
As well as being a marketer of Rett Kathy has become an expert in Rett Syndrome and is on the National Institutes of Health Board and has besieged the American Congress for money to be spent on research in to a cure for Rett Syndrome.
MICHAEL SULLIVAN
Mike did his thesis on methylation which is one of the processes affected when the MeCP2 gene is mutated or deleted to cause Rett Syndrome. After wards he did a Medical Degree and specialised in Paediatric Oncology. He wanted to make sick children better. He was brought back from Melbourne to NZ by the Air New Zealand programme called COINS FOR CANCER to work on scientific research in Dunedin as well as at the hospital. Now he works in Christchurch and has his own Laboratory but still working alongside the Cancer Genetic Lab in Dunedin.
Mike met Kathy Hunter at a Paediatric Conference in California at the time the gene for Rett Syndrome was discovered. Kathy put Gillian in touch with Mike and he has become devoted to the task of keeping NZ parents up to date and enabling the genetic testing to happen in his laboratory.
He has a gift of being able to describe the complex scientific process in a simple way.
HAEMISH CRAWFORD
Haemish is one of NZ’s foremost Orthopaedic surgeons. Fortunately he likes living in Auckland as he could work anywhere in the world.
When our Patron Mike McRoberts had knee surgery Haemish was talking to Mike and said he knew about Rett Syndrome as he had operated on some of the girls. The scoliosis operation is something we do not look forward to with the girls, but as Kathy described last time having the surgery at the right time ensures the organs, especially the lungs are not affected by the curving of the spine.
Haemish , who has a very busy practice in Auckland has generously come to talk about the way orthopaedic surgery can help the girls and to be of comfort to the parents who are contemplating the operation.
Daphne Rickson
Daphne Rickson has been tutoring and lecturing on the Master of Music Therapy programme at Massey University since its inception in 2003. She takes responsibility for teaching music therapy methods, organising and supervising clinical practice and supervising second year masters research projects in music therapy.
Daphne completed the New Zealand Society for Music Therapy Accreditation Programme in 1991. She has practiced music therapy with a range of client populations, but specialises in work with special education settings with children and adolescents who have physical, or social and emotional needs. Daphne graduated with a Master of Health Science (Mental Health) from Otago University, following an investigation into whether music therapy was effective in promoting prosocial behaviours in aggressive adolescent boys. A further project which explored music therapy with adolescents who have Attention Deficit Hyperactivity Disorder (ADHD) led to the Master of Music Therapy, qualification. In 2003-4 Daphne was also a researcher for the Ministry of Education, investigating effective practice in education for children who have Autism. Daphne's doctoral research explores the potential role of music in special education settings. The work involves a large scale action research project collaborating with special education teams to develop a music therapy assessment and consultation protocol.
Photos
Eminent speakers at the Rett NZ Conference. Parents learnt so much from Daphne Rickson, music therapist from the NZ School of Music in Wellington, Dr Mike Sullivan, paedatric oncologist and researcher in the genetics of Rett sydrome, Mr Haemish Crawford, orthopadic specialist, who operated on the knee of Rett NZ patron Mike McRoberts, and Kathy Hunter the inspirational president of the International Rett Syndrome Association.
Music therapist Daphne Rickson. Daphne gave us an inspiring lecture on how music therapy can be used to help Rett girls. She also managed to caught up with Mandy's parents at the conference, who were grateful to her for her help when Mandy was young.
Marlene Rawhiti and Kathy Hunter. Kathy was in NZ to launch her new Handbook on Rett Syndrome, a parent's guide book to living with this complex disorder. In 1984 Kathy started a organisation to help families with Rett syndrome. Kathy now has seen over 1000 girls and has thousands of families on her database. Kathy is being presented with a tuku momento by Marlene Rawhiti, mother of Briar.
Doug Laing, our treasurer, takes time to brief Scott Hunter on the programme he has organised for the Hunters when they visit the Laings next week.
Research co-ordinator Stephen Low and vice president Mark Campbell.
Jacinta Hall watching the proceedings.
Christine Morrison, membership secretary, collects details from Gavin, Rebecca and Wendy.
Proud dad Rob Pakes with his daughter Alysha who is 5 years old.
Original details of conference:-
Rett New Zealand Conference: Empowerment 2007
Where: Rydges Hotel, Rotorua
When: Fri. 27–Sat. 28 April, 2007. View or download (pdf file) the programme.
Speakers: Kathy Hunter, Mike Sullivan, Haemish Crawford and Daphne Rickson.
As well as being a busy paedatric oncologist, Dr Michael Sullivan also runs research projects at the Christchurch Hospital where the testing of the genes involved in Retts is done for New Zealand families. Mike is brilliant at explaining complex science in a way we can all understand.
Dr Haemish Crawford is a well known Auckland orthopaedic specialist and will talk about scoliosis and other orthopaedic problems faced by some of the girls. Haemish was patron Mike McRobert's surgeon after he damaged his knee last year. Mike spoke to Haemish about Rett Syndrome. Haemish said he knew some of our families and would be able to give them advice. Briar's Mother, Marlene found Haemish very sympathetic when they were discussing a possible operation before Christmas.
Daphne Rickson of the NZ School of Music in Wellington will be coming to speak on musical therapy for girls who have Rett syndrome.
Cost: Through a generous sponsorship deal with Rydges Hotel, we are able to offer discounted attendance fees for people booking accomodation at Rydges. We also offer a discounted rate to families, extended familes or nominated caregivers of Rett children, past or present.
Accomodation at Rydges: $45 (Rett family)/$85 associate per night, share twin (Friday and/or Saturday)
Conference attendance with accomodation at Rydges: $15 (family)/$25 (associate) per person
Saturday dinner: $15 (family)/$30 (associate) per person
Day rate only (conference attendance with no accomodation): $30 (family)/$35 (associate)
Day rate and dinner: $40 (family)/$55 (associate)
Registration: Please download and fill out the registration form (pdf file; requires Acrobat Reader, which can be downloaded at this link). Return to PO Box 10111, Arataki, Mount Maunganui by April 9.
Payments may be made by cheque, made out to "NZORD - Rett syndrome" and mailed along with the registration form, or by bank transfer to account number 06-0507-0134243-00 (please include your name in the statement details of the transfer).
For further details or questions: contact rpakes@tollnz.co.nz.
<p>A full video of the Conference papers will be on our website soon (<a href="./?a=3406">now available</a>). Meanwhile here is a prÉcis of the proceedings.</p>
<p>Kathy Hunter was welcomed as the Founder and President of the International Rett Syndrome. Lisa Magee said “Kathy is the most inspirational person she has ever met.”</p>
<p>The International motto is "Care today, cure tomorrow".</p> <h2>Care today</h2>
<p>On "Care today" Kathy talked about the three new areas of research that will make a difference to the day to day management of the symptoms.</p>
<p>1. Anxiety – a drug is being trialed by Dr Zoghbi (who discovered that Rett Syndrome was explained by mutations on the MeCP2 gene) to help to alleviate the symptoms of anxiety which the girls and women suffer from. Meanwhile, Kathy is using buspar (Buspirone) for Stacie and has found it to be very helpful.</p>
<p>2. Constipation – because the stools are often high in the bowel Kathy has found ……is better than the suppositories that often cause cramping and even more discomfort.</p>
<p>3. French Scientists are working on a drug to help with the breathing difficulties some of the girls with Rett experience. See….</p>
<p>4. Sleep is important for everyone. Many girls do not sleep well. Ensure you get your respite care to cope with the many demands of your daughter’s routine.</p> <h2>Cure tomorrow</h2>
<p>Adrian Bird’s research has given great hope to researchers and to parents.</p>
<p>Mike Sullivan explained how the process of methylation affects the development of the nervous system. He explained how gene expression leads to the problems with Rett Syndrome and with Wilm’s tumour in child cancer. Mike explained how the different mutations present the different symptoms and patterns of Rett Syndrome. Mike explained that Prof . Bird’s research is ground breaking but there is still a long way to go before it can be tried on the patients with Rett syndrome. However, it does show there is a possibility of a reversal of the symptoms, especially at an early stage.</p>
<p>Haemish Crawford explained there are many conditions which require scoliosis surgery. It is important to operate at the stage before the spine begins to curve too far to retrieve a successful outcome. It is important to watch for the signs of skeletal curvature and ask your Doctor for a referral to an Orthopaedic specialist. A number of parents commented on the success of the operation for their daughters. He said lung function may be affected for one to two years after the operation.</p>
<p>Daphne Rickson gave an interesting lecture on the use of music therapy for helping with communication by the girls responding by using the calming effect of music. Choice of songs is one way to encourage communication as the girls have definite ideas about which songs they prefer.</p>
<p>The Conference videos will be posted on the website within the next month so everyone can enjoy the complete lecture by each of these outstanding speakers.</p> <h2>Bios of the conference speakers</h2> <h3>KATHY HUNTER</h3>
<p>Kathy is the Founder and President of the International Rett Association in Washington DC. Stacey, Kathy and Scott’s daughter was the 36th girl in the world to be diagnosed with Rett Syndrome. Today Kathy has seen over 1000 girls. From working from her kitchen table at home, Rett Syndrome is now studied in so many countries and there are laboratories in so many universities all over the world. Kathy’s devotion to the task has been superhuman. The reprint of her book just been released and we are all looking forward to this new edition which we know takes time and energy.</p>
<p>As well as being a marketer of Rett Kathy has become an expert in Rett Syndrome and is on the National Institutes of Health Board and has besieged the American Congress for money to be spent on research in to a cure for Rett Syndrome.</p> <h3>MICHAEL SULLIVAN</h3>
<p>Mike did his thesis on methylation which is one of the processes affected when the MeCP2 gene is mutated or deleted to cause Rett Syndrome. After wards he did a Medical Degree and specialised in Paediatric Oncology. He wanted to make sick children better. He was brought back from Melbourne to NZ by the Air New Zealand programme called COINS FOR CANCER to work on scientific research in Dunedin as well as at the hospital. Now he works in Christchurch and has his own Laboratory but still working alongside the Cancer Genetic Lab in Dunedin.</p>
<p>Mike met Kathy Hunter at a Paediatric Conference in California at the time the gene for Rett Syndrome was discovered. Kathy put Gillian in touch with Mike and he has become devoted to the task of keeping NZ parents up to date and enabling the genetic testing to happen in his laboratory.</p>
<p>He has a gift of being able to describe the complex scientific process in a simple way.</p> <h3>HAEMISH CRAWFORD</h3>
<p>Haemish is one of NZ’s foremost Orthopaedic surgeons. Fortunately he likes living in Auckland as he could work anywhere in the world.</p>
<p>When our Patron Mike McRoberts had knee surgery Haemish was talking to Mike and said he knew about Rett Syndrome as he had operated on some of the girls. The scoliosis operation is something we do not look forward to with the girls, but as Kathy described last time having the surgery at the right time ensures the organs, especially the lungs are not affected by the curving of the spine.</p>
<p>Haemish , who has a very busy practice in Auckland has generously come to talk about the way orthopaedic surgery can help the girls and to be of comfort to the parents who are contemplating the operation.</p> <h3>Daphne Rickson</h3>
<p>Daphne Rickson has been tutoring and lecturing on the Master of Music Therapy programme at Massey University since its inception in 2003. She takes responsibility for teaching music therapy methods, organising and supervising clinical practice and supervising second year masters research projects in music therapy.</p>
<p>Daphne completed the New Zealand Society for Music Therapy Accreditation Programme in 1991. She has practiced music therapy with a range of client populations, but specialises in work with special education settings with children and adolescents who have physical, or social and emotional needs. Daphne graduated with a Master of Health Science (Mental Health) from Otago University, following an investigation into whether music therapy was effective in promoting prosocial behaviours in aggressive adolescent boys. A further project which explored music therapy with adolescents who have Attention Deficit Hyperactivity Disorder (ADHD) led to the Master of Music Therapy, qualification. In 2003-4 Daphne was also a researcher for the Ministry of Education, investigating effective practice in education for children who have Autism. Daphne's doctoral research explores the potential role of music in special education settings. The work involves a large scale action research project collaborating with special education teams to develop a music therapy assessment and consultation protocol.</p> <h2>Photos</h2> <h1> <img src="./?a=3774" alt="Conference 2007 speakers. " style="border: 0px solid rgb(0, 0, 0);" height="153" hspace="0" vspace="0" width="360" /></h1>
<p>Eminent speakers at the Rett NZ Conference. Parents learnt so much from Daphne Rickson, music therapist from the NZ School of Music in Wellington, Dr Mike Sullivan, paedatric oncologist and researcher in the genetics of Rett sydrome, Mr Haemish Crawford, orthopadic specialist, who operated on the knee of Rett NZ patron Mike McRoberts, and Kathy Hunter the inspirational president of the International Rett Syndrome Association.</p>
<p><img src="./?a=3775" alt="Daphne Rickson. " style="border: 0px solid rgb(0, 0, 0);" height="240" hspace="0" vspace="0" width="160" /></p>
<p>Music therapist Daphne Rickson. Daphne gave us an inspiring lecture on how music therapy can be used to help Rett girls. She also managed to caught up with Mandy's parents at the conference, who were grateful to her for her help when Mandy was young.</p>
<p><img src="./?a=3777" alt="Marlene Rawhiti and Kathy Hunter. " style="border: 0px solid rgb(0, 0, 0);" height="240" hspace="0" vspace="0" width="177" /></p>
<p>Marlene Rawhiti and Kathy Hunter. Kathy was in NZ to launch her new Handbook on Rett Syndrome, a parent's guide book to living with this complex disorder. In 1984 Kathy started a organisation to help families with Rett syndrome. Kathy now has seen over 1000 girls and has thousands of families on her database. Kathy is being presented with a tuku momento by Marlene Rawhiti, mother of Briar.</p>
<p><img src="./?a=3778" alt="Doug Laing and Scott Hunter. " style="border: 0px solid rgb(0, 0, 0);" height="230" hspace="0" vspace="0" width="360" /></p>
<p>Doug Laing, our treasurer, takes time to brief Scott Hunter on the programme he has organised for the Hunters when they visit the Laings next week.</p>
<p><img src="./?a=3779" alt="Stephen Low and Mark Campbell. " style="border: 0px solid rgb(0, 0, 0);" height="257" hspace="0" vspace="0" width="360" /></p>
<p>Research co-ordinator Stephen Low and vice president Mark Campbell.</p>
<p><img src="./?a=3781" alt="Jacinta Hall. " style="border: 0px solid rgb(0, 0, 0);" height="240" hspace="0" vspace="0" width="128" /></p>
<p>Jacinta Hall watching the proceedings.</p>
<p><img src="./?a=3782" alt="Christine Morrison, Gavin, Rebecca and Wendy. " style="border: 0px solid rgb(0, 0, 0);" height="239" width="360" /></p>
<p>Christine Morrison, membership secretary, collects details from Gavin, Rebecca and Wendy.</p>
<p><img src="./?a=3783" alt="Proud dad Rob Pakes. " style="border: 0px solid rgb(0, 0, 0);" height="239" hspace="0" vspace="0" width="360" /></p>
<p>Proud dad Rob Pakes with his daughter Alysha who is 5 years old.</p> <h2>Original details of conference:-</h2>
<div style="border: medium solid; padding: 5px;"> <h1>Rett New Zealand Conference: Empowerment 2007</h1>
<p><strong>Where:</strong> Rydges Hotel, Rotorua</p>
<p><strong>When:</strong> Fri. 27–Sat. 28 April, 2007. <a href="./?a=3422#Programme">View</a> or <a href="./?a=3785">download</a> (pdf file) the programme.</p>
<p><strong>Speakers:</strong> Kathy Hunter, Mike Sullivan, Haemish Crawford and Daphne Rickson.</p>
<blockquote dir="ltr" style="margin-right: 0px;">
<p>As well as being a busy paedatric oncologist, <strong><em>Dr Michael Sullivan</em></strong> also runs research projects at the Christchurch Hospital where the testing of the genes involved in Retts is done for New Zealand families. Mike is brilliant at explaining complex science in a way we can all understand.</p>
<p><strong><em>Dr Haemish Crawford</em></strong> is a well known Auckland orthopaedic specialist and will talk about scoliosis and other orthopaedic problems faced by some of the girls. Haemish was patron Mike McRobert's surgeon after he damaged his knee last year. Mike spoke to Haemish about Rett Syndrome. Haemish said he knew some of our families and would be able to give them advice. Briar's Mother, Marlene found Haemish very sympathetic when they were discussing a possible operation before Christmas.</p>
<p><strong><em>Daphne Rickson</em></strong> of the NZ School of Music in Wellington will be coming to speak on musical therapy for girls who have Rett syndrome.</p> </blockquote>
<p dir="ltr"><strong>Cost:</strong> Through a generous sponsorship deal with Rydges Hotel, we are able to offer discounted attendance fees for people booking accomodation at Rydges. We also offer a discounted rate to families, extended familes or nominated caregivers of Rett children, past or present.</p>
<blockquote dir="ltr" style="margin-right: 0px;">
<p dir="ltr"><strong>Accomodation at Rydges:</strong> $45 (Rett family)/$85 associate per night, share twin (Friday and/or Saturday)
<br /> <strong>Conference attendance with accomodation at Rydges:</strong> $15 (family)/$25 (associate) per person
<br /> <strong>Saturday dinner:</strong> $15 (family)/$30 (associate) per person
<br /> <strong>Day rate only (conference attendance with no accomodation):</strong> $30 (family)/$35 (associate)
<br /> <strong>Day rate and dinner:</strong> $40 (family)/$55 (associate)</p> </blockquote>
<p><strong>Registration:</strong> Please download and fill out the <a href="./?a=3786">registration form</a> (pdf file; requires Acrobat Reader, which can be downloaded at <a href="http://www.adobe.com/products/acrobat/readstep2.html">this link</a>). Return to PO Box 10111, Arataki, Mount Maunganui by April 9.</p>
<p>Payments may be made by cheque, made out to "NZORD - Rett syndrome" and mailed along with the registration form, or by bank transfer to account number 06-0507-0134243-00 (please include your name in the statement details of the transfer). </p>
<p><strong>For further details or questions:</strong> contact <a href="mailto:rpakes@tollnz.co.nz">rpakes@tollnz.co.nz</a>.</p> </div>
<p><a name="Programme" id="Programme"></a><img src="./?a=3787" alt="Conference 2007 programme. " style="border: 0px solid rgb(0, 0, 0);" height="842" hspace="0" vspace="0" width="595" /></p>
