Weekend reading and viewing 10th - 11th November 2012

 20 Special Needs Parenting Tips For Sticky Situations, Karen Wang, The Friendship Circle, 7th November 2012

This is what disability looks like, Mama Mia, 8th November 2012 

Fears for NDIS Simon Duffy, Centre for Welfare Reform, 26th October 2012

Grant to improve weight and activity of kids with Down syndrome, Bob Shepard Uuniversity of Alabama Birmingham News 1 Nov 2012

Eleanor Bailey on the 'r' word, Northwest Down Syndrome Association (Oregon, USA), 24 October 2012 Advocate Eleanor Bailey shares her thoughts on the "the 'R' word" and its effect on those in our community with disabilities. This clip is from an interview conducted for "We All Belong", a short film about school segregation and inclusion.

Overview of the work of the Down Syndrome Center for Research and Treatment at the University of California, San Diego, 19th August, 2011

Access All Areas Film Festival 2012

Each year Access All Areas Film Festival hosts FREE accessible screenings in cinemas in Sydney and Western Sydney, in community venues and primary schools across NSW and in other States, around early December, to coincide with International Day for People with Disability. The 2012 program includes 'family friendly shorts', and in some venues this year, the Australian feature, The Sapphires.

• Dates, program and venue details are available on the website
• Access All Areas Film Festival on Facebook

Library Thursday: new DVD presents accommodation options for people with disability living in NSW

NSW Ageing, Disability and Home Care (ADHC) has released a set of communication resources to highlight the accommodation support options available to people with disability in NSW.

Page 5 of the new booklet

The Accommodation Support Options DVD is a collection of stories about people with disability who are accessing a range of accommodation funded by ADHC, and operated by both ADHC and the non-government sector.

The stories highlight the various support options that are available and how different individuals, with a range of ages, disability support needs and personal situations are currently using them.

Along with the DVD, an updated Accommodation Support Options booklet has been published, which reflects the contemporary models in an easy to read, and visually engaging format. It is available to read and/or download from here.

Fact sheets that explore some of the more specific elements of each model, including eligibility and suitability are also available.

• Find out more about Accommodation Support Options.
• Drop-in Support Fact Sheet, August 2012

Source: ADHC News page, 25th October 2012

• Copies of the DVD will be available for loan to Down Syndrome NSW members from our library

Are you interested in helping us learn more about memory development in school-aged children with Down Syndrome?

An ongoing memory research program at the University of NSW is currently recruiting school aged children with Down syndrome:

We are currently looking for participants aged 6-17 years old with Down Syndrome for a study at the University of New South Wales. The study will involve participating in a series of memory tasks with pictures and objects and a standardized task to measure cognitive and communication sk

ills. The study is on-campus, parking is free and you will be paid $10 to cover petrol costs. The participant will also receive a certificate and will get to choose a small thank-you gift at the end of the session.

If you’re interested in further information or would like to participate, please contact Lynette Roberts on 0405 721 076 or at lynette.roberts@unsw.edu.au

Accessible Dance Showcase: Sydney, 1 December

Sydney Creative Movement: Accessible Dance Showcase

Saturday 1st December, 2.00 pm

Lend Lease Darling Quarter Theatre

Terrace 3, 1-25 Harbour Street, Sydney

Tickets

Adults: $22.00 (or special discounted price for a group of 10 adults: $200.00) 

Concession: $16.00 

• Sydney Creative Movement website - details and online booking

Down Syndrome Awareness Week in Canada

It is Down Syndrome Awareness Week in Canada this week - a spot-on Canadian Down Syndrome Society poster.

Guidelines to ease breaking bad news to a person with an intellectual disability

A screen shot from the website

Our colleagues at the Down Syndrome Association in London recently recommended the new website, Breaking Bad News, developed specifically to guide anyone breaking bad news to a person with an intellectual disability.  Their Down2Earth group for adults with Down syndrome participated in the research that resulted in the website, and the book of the same name.

The website provides easy to understand guidelines, more detailed background information, and links to the research literature that informed it. The 'bad news' can be anything that the person with a disability is likely to view negatively, and the guidelines can be used in many situations.

How the guidelines came about:
The guidelines were developed by Dr Irene Tuffrey-Wijne and her team at St George’s University of London. Both during her clinical practice and in her research involving people with intellectual disabilities who were terminally ill, Irene noticed that issues around breaking bad news were worrying families, carers, professionals. ‘Should we tell him? What should we tell, how, and by whom?’ Professionals found that the models for breaking bad news that they used for other patients were of limited use when the patient had intellectual disabilities. Families, carers and paid care staff were anxious to help the person in the best possible way without causing undue distress, but often did not know how to go about this.

As a consequence, Irene conducted a two year study focusing exclusively on the issue of breaking bad news to people with intellectual disabilities. This involved focus group meetings and interviews with over 100 people across the UK, including people with intellectual disabilities, family carers, intellectual disability professionals and health care professionals (mostly doctors and nurses). Many of these participants also gave feedback on Irene’s draft guidelines for breaking bad news, and expressed a desire to have these guidelines publicly available and easily accessible. This website is the result.

Overview:

Ten top tips for breaking bad news 

• Unique and flexible guidelines that can be used by practitioners, families and carers to ease the process of breaking bad news to people with intellectual disabilities
• Guidelines are adaptable to individual communication ability and level of understanding
• Background information, explanations of the guidelines, practical tips and exercises
• Ideal learning resource for social care, medical, nursing and other healthcare students, as well as postgraduate professionals

From the testimonials page:

For families afraid of bad news being given bluntly, the guidelines have enabled me to show families how we are going to support their relative to understand information, and to reassure them that we would not arbitrarily give someone information they do not or cannot understand. We use the guidelines to build up someone’s knowledge.

I’ve started to use the guidelines in a number of different scenarios – with a someone in renal failure, building on concrete understanding of what is happening now; with a terminally ill client to try and help her understand what was happening, and to help her family come to terms with her prognosis; and more recently with a client who was in hospital, and needed to move home. The guidelines helped us to establish his level of comprehension, and the way in which his world works.

With the website and book, I am looking forward to taking the guidelines out into the multidisciplinary team, and to be able to provide them with the links and tools they need to use it.”Sue Marsden, Community Intellectual DisabilityTeam, UK

Research news

UK study of reading intervention with children with Down syndrome published
The Down Syndrome Education International reading intervention research study has been published, and is available in full, online:

Kelly Burgoyne, Fiona J. Duff, Paula J. Clarke, Sue Buckley, Margaret J. Snowling, Charles Hulme, Efficacy of a reading and language intervention for children with Down syndrome: a randomized controlled trial, Journal of Child Psychology and Psychiatry, Volume 53, Issue 10, pages 1044–1053, October 2012

Registry connects people with Down syndrome with researchers
A registry of patients with Down Syndrome has been commissioned in the US, that '... will facilitate contacts and information sharing among families, patients, researchers and parent groups,' and 'Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.' Creation of the registry, will be funded by the US national Institutes of Health, through the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). 
NIH media release, 26th October 2012

Linda Crnic Institute for Down Syndrome Announces $1 Million in Major Challenge Grants

The Linda Crnic Institute for Down Syndrome at the Anschutz Medical Campus in Aurora will jump-start research benefiting people with Down syndrome by presenting scientists with $1 million in grants.

The grant program, called the annual “Crnic Major Challenge Grants,” is funded with money from the Anna and John J. Sie Foundation, the Global Down Syndrome Foundation, the Chancellors of the Boulder and Denver campuses and the Dean of the School of Medicine. Under the program, the Crnic Institute will award grants of up to $100,000 a year to scientists across research disciplines at the CU-Boulder and Anschutz campuses.

Dr. Tom Blumenthal, Executive Director of the Linda Crnic Institute, is optimistic about what this will do for the field. “I believe we will attract the best and brightest scientists with innovative scientific proposals,” Blumenthal said. “Most important, we expect the science will clearly benefit people with Down syndrome.”

A key criterion for applying for the Crnic Major Challenge Grants will be attending an annual symposium with keynotes providing the latest information about research in the field of Down syndrome. This year’s symposium is scheduled for Friday, Oct. 19, at the Anschutz campus, and about 150 people are expected to attend. The symposium will educate CU researchers about the current knowledge of the causes and properties of Down syndrome in order to spark interest in turning research in the direction of studying the most commonly occurring genetic condition, affecting one in every 691 births in the U.S. The research also will aim to improve the lives of people with Down syndrome through enhanced medical care and cognitive improvement.

Global Down Syndrome Foundation media release, Denver, Colorado, 17th October 2012

Two large research studies into Alzheimer's disease and Down syndrome announced

UK consortium awarded £2.5m for research into Down syndrome, learning disabilities and dementia
Dr André Strydom (UCL Mental Health Sciences Unit) and Professors Elizabeth Fisher and John Hardy (both UCL Institute of Neurology) have been successful in their application to the Wellcome Trust for a Strategic Award to understand the processes involved in the Alzheimer’s Disease that often occurs as people with Down Syndrome age.

The London Down Syndrome (LonDownS) Consortium's successful bid, worth £2.5 million, also incorporates researchers from other institutes, including Professor Dean Nizetic (Queen Mary, University of London) and Dr Victor Tybulewicz (MRC National Institute for Medical Research), along with Professor Annette Karmiloff-Smith (Birkbeck College Centre for Brain & Cognitive Development, University of London).

Principal Applicant, Dr André Strydom, said: “This project brings together researchers from different disciplines to tackle the cognitive problems associated with Down Syndrome. We want to understand why people with Down Syndrome are much more likely than the general population to develop Alzheimer’s disease (dementia), and we will also look for markers that can identify those who go on to develop dementia before they present with problems. We are hoping to identify risk factors for dementia during infancy, which will help us to target preventative treatments. We will also learn much more about the learning difficulties of Down Syndrome, which may lead to new treatments. It is the most advanced research project on cognition in Down Syndrome that we know of and the findings will also have implications for the early identification and treatment of Alzheimer’s disease in the general population.

The project involves cutting-edge inter-disciplinary research by leading geneticists, psychiatrists and neuroscientists who will be working closely with the Down’s Syndrome Association and the Down’s Syndrome All Party Parliamentary Interest Group.The project also includes North American and European collaborators to ensure the research is standardised for international programmes.

Professor Fisher said: ‘It is very exciting to be funded to bring together our work on Down syndrome mouse models and directly align them with information from human studies."

Dr Victor Tybulewicz said: “This Award will enable us to translate our work on Down Syndrome from animal models to humans, and will provide new insights into the pathological changes underlying this complex human syndrome."

UCL News 17 October 2012

Three year US study of Alzheimer's disease and Down syndrome to be funded by Johnson and Johnson
'In a new lead on Alzheimer's research, Johnson & Johnson is bankrolling a three-year pilot study of people with Down syndrome to identify the early changes that herald dementia, which afflicts up to 75 percent of adults with the condition.

The aim is to generate support for a much bigger, public-private partnership funded by drugmakers, advocates and government agencies that will study at least 1,000 people with Down syndrome, tracking them from an early age and eventually testing treatments to keep dementia from developing.

... Experts in Down syndrome and Alzheimer's who gathered in Chicago for a workshop on the idea at the Alzheimer's Association offices (in September) say it may offer the best scientific model yet for testing drugs to prevent the degenerative brain disease.

... The dementia that develops in people with Down syndrome may bear a stronger resemblance to the disease in the broader population because it differs from other forms of early-onset Alzheimer's, researchers say. ... People with Down syndrome appear to develop dementia because of their extra copy of an otherwise normal APP gene.

"There is a possibility that the Down syndrome population mimics (late-onset) Alzheimer's disease a little more closely," said Manji, co-author of a commentary this month in Nature Reviews Drug Discovery that laid out plans for the study.

... (The Down Syndrome Center for Research and Treatment at the University of California, San Diego) will run the 12-patient pilot study, which aims to lay the foundation for the larger project, dubbed the Down Syndrome Biomarker Initiative.

What is not yet known is how many parents of people with Down syndrome would be willing to sign up their adult children for such trials.'

Extracted from Down syndrome may hold key to new Alzheimer's treatments, by Julie Steenhuysen Reuters (US edition),  published online 25th September 2012 

Weekend reading and viewing 3rd - 4th November

National Disability Insurance Scheme: Eligibility and reasonable and necessary supports consultation –Down Syndrome Australia response, DSA DBrief #1, October 2012

Gonski Fact Sheet: Questions and Answers, I Give a Gonski. Want to know more about the Gonski school funding review? I Give a Gonski is the Australian Education Union's campaign for implementation of the recommendations of the Gonksi Review.

Prenatal test raises ethical concerns, Editorial, Japan Times, 30th October 2012

Angela Lombardo's 31 Posts for Down Syndrome Awareness Month Down Syndrome Program at Boston Children's Hopsital Feacebook Page, 1st - 31st October 2012.  We flagged these in our first DS Awareness Week post, but thought a reminder was in order now that the series is complete. Each post is marked # (1 - 31). We hope they might reappear as a downloadable collection.

Coor Down Integration Day A very classy Italian  TV advertising campaign from World Down Syndrome Day 2012.


Just Like You  - Down syndrome (video) Down Syndrome Guild of Greater Kansas City and Just Like You, an organisation that '...makes films to answer kids' questions about unique circumstances.' October 2012. Now available on DVD and online.

Don't DIS myAbilty 2012 - Brenton  31st October 2012. NSW Don't DIS my ABILITY 2012 ambassador Brenton Ashford-Potter talks about his position as coach and trainer for the Bushrangers footy team and the importance of community. And his local regional newspaper, The Illawarra Mercury has published a feature about Brenton today, along with a series of very happy photos.


Pixel Perfect The Scientist, 1st October 2012.Winner and runners-up in the Labby Multimedia Awards 2012.   Scroll down to the image headed 'Hippocampus' in the Runners Up category -  an image of the hippocampus (a region of the brain) of a mouse model of Down syndrome, produced by Ahmad Salehi,  Stanford Medical School. Salehi has found that in Down syndrome mice, a region of the hippocampus that plays a significant role in contextual learning, shrinks over time.

Down Syndrome NSW 2013 calender: order now

The 2013 Down Syndrome NSW Calender has arrived and is ready to be ordered!

It is ideal for end of year gifts, and of course every family needs one.

To order your 2013 Calender online click HERE

To order your 2013 Calender via fax or post please click HERE

For any further details or to order your 2013 Calender over the phone, please call Siena on (02) 9841 4411

Edit 13th November: there may be some difficulty with online ordering.  If so, Please phone Siena at the Down Syndrome NSW office, on 02 9841 4411 to order your calendars. We apologise for the inconvience.

NDIS legislation to be introduced to Parliament next week

Media release from Every Australian Counts, 31st October:

A victory for campaigners, but still no funding

The disability community has welcomed today’s promise by the Federal Minister for Disability Reform that the National Disability Insurance Scheme (NDIS) legislation will be introduced to parliament in the final sitting week of this year.

The announcement made by Minister Jenny Macklin during her Press Club address comes a few days after more than 40,000 people attended more than 1700 DisabiliTEA events across Australia calling for the NDIS to be fully funded and rolled out nationally.

Every Australian Counts Campaign Director, John Della Bosca, said the Government’s commitment to introduce the NDIS legislation is a significant milestone towards making the NDIS real.

However, he cautioned that the legislation would not be a magic fix for disability support, with a commitment to $5 billion needed in next May’s budget for the full roll out of the scheme.

“The Every Australian Counts campaign commends on the Federal Government on its commitment to introduce legislation in support of the NDIS this year. While we look forward to seeing and discussing the detail of the legislation, we commend this important milestone.” Mr Della Bosca said today.

“Australia’s disability system is broken, it funds support for just five in every ten people who need help. This systemic underfunding means children go years desperately needing a new wheelchair, adults are only supported to have two showers a week and young people are abandoned to live in aged care facilities.

“The introduction of the NDIS legislation alone will not make the NDIS a reality. In politics, nothing is truly locked in until it is financed in the budget – the campaign has been calling on the leaders of both major parties to give a financial commitment to fund the full roll out of the NDIS by 2018.

“Every Australian with a significant disability deserves the support they need to reach their potential in life. It’s up to our political leaders to deliver a sustainable funding model that makes this a reality,” he said.

NSW Carer Awards

Lisa and Brenton Ashford-Potter

Lisa Ashford-Potter from Woonona (in Wollongong, NSW) was one of twelve recipients of 'Highly Commended' Carer Awards, during NSW Carers Week (14 - 20 October).  Lisa's Awards Profile reads:

Lisa’s son Brenton is 22 years old and is a volunteer, sportsman and martial arts practitioner. Brenton has Down syndrome, severe verbal dyspraxia and mild motor and oral dyspraxia. Together, Lisa and Brenton have created their own tutoring and community awareness  organisation, Chatter Hands, which provides services to families,  TAFEs, universities and community organisations to help people to communicate through Australian Sign Language (Auslan). 

Lisa followed the Asset Based Community Development (ABCD) approach to care for Brenton, looking at ways that he can be part of and supported by his community as an active and contributing member.   

She is a community welfare worker and a member of the ABCD Asia Pacific Network, presenting at national and international conferences, Lisa also provided care for several other members of her family including palliative care at home for her father. 

(Brenton was named last week as one of the Don't DIS myAbility campaign ambassadors for 2012.)

Congratulations Lisa, on your award.

You can read about all of the 2012 NSW Carers Awards Recipients here, including Carer of the Year, Maria Heaton.

• Chatter Hands

Library Thursday: new books and book awards

Photo: Richard Bailey

Shifting Perspectives - the book
Over eight years, curated by  photographer Richard Bailey, the Shifting Perspectives photographic collection has developed from a  calendar shoot (365 people with Down syndrome photographed for a UK calendar), through several exhibitions, a beautiful online exhibition, an app, and now, into a high quality, beautiful book, available to be ordered now (shipping in early December), through the Down's Syndrome Association in London.

All of the photographers are professionals, all of them have a personal connection with someone who has Down syndrome.  It has the hallmarks of a classic.

• Shifting Perspectives Facebook page has more images of the book 

Sam’s Top Secret Journal – Book 1: We Spy by Sean Adelman
Join Sam as she embarks on her first big adventure in this middle-grade mystery full of fun, suspense…and just the right amount of spying!

But when curious occurrences start to disturb her community, Sam’s carefree life suddenly becomes dangerously serious ... read more on the book's web page at Raising Expectations (and there is a link to purchase it).

Sam is a middle school girl living a normal life–except when she is occasionally bullied for the differences kids perceive in her. Sam has Down Syndrome. But Sam is just like any of her friends. She likes to play basketball, perform in community plays, gossip about boys at lunchtime, and write about life in her top-secret journal. Plus, her Uncle Alex is coming home from Iraq soon, and with so much to do, there’s hardly time to dwell on anything except getting reading for his visit!
The Arc of King County interviewed the author, Sean Adelman, and reviewed the book ...
We Spy is aimed at kids in Grades 4-7 and includes lessons on inclusion, acceptance and friendship. It’s entertaining for young readers, but it also conveys the life lesson that sometimes the things we take for granted aren’t always what we think.

• Sam's Top Secret Journal on Facebook

Speech Pathology Australia 2012 Book Awards
Speech Pathology Australia awarded six authors for excellence in the development of children’s speech, language and literacy skills at a ceremony to be held at the Royal Children’s Hospital in Melbourne on 16th October

2012 Best Books for Language and Literacy Development awards:

Sonya Hartnett, for Come Down, Cat!

Anh and Suzanne Do for The Little Refugee 

Elizabeth Fensham for The Invisible Hero

Azmen Sebastian for The Snake and the Boy

Graeme Base was presented with a lifetime achievement award for his contribution to Australian children’s literature.

A fairer approach to migration for people with disability

Australian Minister for Immigration and Citizenship, Chris Bowen, media release, Wednesday, 31 October 2012:

The government will act to ensure a fairer, more flexible and individualised approach to people wanting to migrate to Australia who have a disability or health issues, the Minister for Immigration and Citizenship, Chris Bowen MP, announced today.

'The government will now take into account all of the circumstances when assessing prospective visa applicants against the visa health requirement,' Mr Bowen said.

'A 'net benefit' approach will allow decision makers to consider the social and economic benefits an applicant and their family bring to Australia compared to the cost of their health care.

'This will mean an individual's health costs can be offset by the benefit their family will bring to Australian society.'

From 1 July, the government proposes to increase the Significant Cost Threshold - the level at which an applicant's health costs are considered to result in significant health care and community service costs - from $21 000 to $35 000.

The government will also streamline health waivers for offshore humanitarian applicants who fail to meet the health requirement on cost grounds, bringing the offshore policy into line with onshore arrangements.
In order to maintain Australia's health standards, people who want to migrate permanently to Australia must satisfy the health requirement.

'Of course, the government's priority is the protection of public health so we will continue to apply rigorous and consistent health screening procedures,' Mr Bowen said.

'People who are considered to pose a significant health risk to the community will not be granted a visa.'

The proposed changes follow the Government's response to the recommendations made by the Joint Standing Committee on Migration's report, Enabling Australia: Inquiry into the Migration Treatment of Disability.

Mr Bowen will consult on the detailed implementation of the reforms with key stakeholders in coming weeks.

For more information on the health requirement, see The Health Requirement

• Previous posts on this blog about immigration and people with disabilities.

Recap of events for November

Webinars on school inclusion (Family Advocacy)  1st and 5th November

Second Skin, Everleigh  5th November

Siblings Australia workshops, Coffs Harbour  5th, 6th November

Public forum about the NDIS, Sydney  8th November  

Mix it up! exhibition, Leichhardt  8th - 30th November

Circles of Support workshops (Resourcing Families), West Ryde, Newcastle and Coffs Harbour,  13th, 14th and 16th November

ACI Intellectual Disability Forum, North Ryde   15th November

6th World Down Syndrome Swimming Championships, Loano, Italy   15th -  23rd November

Person Centred Approach and Ageing with a Disabiity Forum West Ryde   16th November

Smiles for a Day, Parramatta Stadium  17th November

Sleep disorders in children with special needs, Waverley  19th November 

NDIS in the Hunter, Newcastle  24th November

Buddy Walk 2012 Newcastle: was there dancing?

Yes, there was! And music, and singing, and play ... thanks to MC Steve Passfield for coordinating the entertainment on the day, and for your wonderful music.

Steve Passfield - singer, songwriter, musician and MC

Drawing the raffle prizes

The WaltzSing Matildas

The WaltzSing Matildas

Marissa Matthews

Active Dance

Active Dance

Caroline Earle

Justyn

Hunter School of the performing Arts Marching Band

Jay from Little Kickers volunteered his time to keep the younger kids busy and active 

Ross and Steve


See you next year!

Information event about the NDIS in the Hunter

Mind the Gap Disability Matters; Resourcing Families and In Control Australia present:

A one day event for people with disability, their families, friends and allies, service providers and other interested people, about the National Disability Insurance Scheme, due to launch in the Hunter region in 2013.

Saturday 24 November 2012
Panthers, Newcastle

Who would benefit from attending?

• People with disability, families, friends and allies interested in emerging opportunities
• Service providers interested in assisting people with disability to build the lives they want
• Anyone interested to know more about the NDIS as it begins in the Hunter

Further information:

• Event website
• Facebook event page
• Online registration, or email info@mind-the-gap.net.au or call 02 4957 0846

Families accommodation action group: $3M NSW Government funding

Minister for Disability Services, Andrew Constance, has announced $3 million in capital funding to St George Community Housing for the innovative Sutherland Shire Disability Accommodation Action Group (SSDAAG) pilot project.

"This project is an excellent example of how families, non-government organisations and government can all work together to get the best outcomes for people with disability," Mr Constance said.

"This capital funding grant will go towards providing accommodation options for people with disability in the Sutherland Shire."

Since June 2011, the NSW Government has been working with representatives from SSDAAG and non-government providers in the Sutherland Shire to trial person-centred approaches to planning and budgeting for 18 identified families. Under the project, individualised packages can be pooled to establish a sustainable accommodation setting of families' choosing.

... full text of the Minister's press release.

Better Start Initiative extended from January 2013

While all children with Down syndrome already qualify for funding under the Better Start Initiative, it could be useful for families to know that the Initiative has now been extended to a wider range of disability groups than those previously qualified.  Most families get to know others whose children will have different 'labels', and you might be able to pass the link on to them.

• Ministers' press release, Helping more children with disability get the best start in life, 24th October 2012

... The Minister for Disability Reform, Jenny Macklin, and the Parliamentary Secretary for Disabilities and Carers, Jan McLucas, today announced a $13.4 million boost over five years to expand the Better Start initiative.

The Government’s investment means that from 1 January 2013, children diagnosed with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange, Cri du Chat syndromes and microcephaly can access Better Start funding for the first time ...