In this episode, Danielle Williams, a special needs mum to 2 complex girls with a rare genetic condition called SYNGAP, shares her experience and thoughts on having children with Syngap, their therapies, their experience with NDIS, and so much more.

They are closely connected to individuals and families all over the globe who have the same symptoms their girls have. They have set up fundraising efforts through Syngap Research where they have partnered with the Epilepsy Foundation. They also co-founded a group called SYNGAP Global Network with people from all over the world who are advocates in their own countries.

Episode highlights:
Danielle shares the story of her 2 girls with a rare genetic condition called SYNGAP.
The symptoms and behaviours of children with SYNGAP.
Their experiences and struggles in getting the diagnosis.
Co-founding a global SYNGAP network and setting up a fundraising platform.
The family’s experience in dealing with allied health professionals.
Taking a breather from therapies.
Important things health professionals need to know from a mother’s / family’s perspective.
Their experience with the NDIS and what it has enabled them to do.
Her hopes and dreams for her 2 girls in the next 5 years.
Danielle’s message to allied health professionals as a parent of children with complex needs

Useful Links

Syngap Research Australia
Fundraising Page: http://www.supportepilepsy.com.au/event/SynGAPresearch
Facebook: https://m.facebook.com/Syngapresearch/
Twitter: @SyngapAus

Syngap Global Network Website for Australia
Australia Website: https://www.syngapglobal.net/australia
Facebook: https://www.facebook.com/SyngapGlobalNetwork/

GETA: Genetic Epilepsy Team Australia
Website: www.geneticepilepsyteam.com.au
Facebook: genetic.epilepsy.team.australia
Twitter: @geneticepliepsy

Nacre Links: 

Website

LinkedIn

Twitter

Facebook

Instagram

Pinterest

In this episode, Danielle Williams, a special needs mum to 2 complex girls with a rare genetic condition called SYNGAP, shares her experience and thoughts on having children with Syngap, their therapies, their experience with NDIS, and so much more.
They are closely connected to individuals and families all over the globe who have the same symptoms their girls have. They have set up fundraising efforts through Syngap Research where they have partnered with the Epilepsy Foundation. They also co-founded a group called SYNGAP Global Network with people from all over the world who are advocates in their own countries.
Episode highlights:
<ul>
<li>Danielle shares the story of her 2 girls with a rare genetic condition called SYNGAP.</li>
<li>The symptoms and behaviours of children with SYNGAP.</li>
<li>Their experiences and struggles in getting the diagnosis.</li>
<li>Co-founding a global SYNGAP network and setting up a fundraising platform.</li>
<li>The family&rsquo;s experience in dealing with allied health professionals.</li>
<li>Taking a breather from therapies.</li>
<li>Important things health professionals need to know from a mother&rsquo;s / family&rsquo;s perspective.</li>
<li>Their experience with the NDIS and what it has enabled them to do.</li>
<li>Her hopes and dreams for her 2 girls in the next 5 years.</li>
<li>Danielle&rsquo;s message to allied health professionals as a parent of children with complex needs</li>
</ul>
Useful Links<a href="https://www.buildingblockstherapy.com.au/"></a><a href="https://www.karenfinnin.com"></a>
Syngap Research Australia
<ul>
<li>Fundraising Page: <a href="http://www.supportepilepsy.com.au/event/SynGAPresearch">http://www.supportepilepsy.com.au/event/SynGAPresearch</a></li>
<li>Facebook:<a href="https://m.facebook.com/Syngapresearch/"> https://m.facebook.com/Syngapresearch/</a></li>
<li>Twitter: <a href="https://twitter.com/SyngapAus">@SyngapAus</a></li>
</ul>
Syngap Global Network Website for Australia
<ul>
<li>Australia Website: <a href="https://www.syngapglobal.net/australia">https://www.syngapglobal.net/australia</a></li>
<li>Facebook: <a href="https://www.facebook.com/SyngapGlobalNetwork/">https://www.facebook.com/SyngapGlobalNetwork/</a></li>
</ul>
GETA: Genetic Epilepsy Team Australia
<ul>
<li>Website: <a href="http://www.geneticepilepsyteam.com.au">www.geneticepilepsyteam.com.au</a></li>
<li>Facebook: <a href="https://www.facebook.com/genetic.epilepsy.team.australia/">genetic.epilepsy.team.australia</a></li>
<li>Twitter:&nbsp;<a href="http://twitter.com/GENETICEPILEPSY">@geneticepliepsy</a></li>
</ul>
<a href="https://www.karenfinnin.com"></a>Nacre Links:&nbsp;
<a href="https://www.nacre.com.au/">Website</a>
<a href="https://www.linkedin.com/in/cathylove/">LinkedIn</a>
<a href="https://twitter.com/NacreConsulting">Twitter</a>
<a href="https://www.facebook.com/nacreconsulting">Facebook</a>
<a href="https://www.instagram.com/nacre_consulting/">Instagram</a>
<a href="https://www.pinterest.com.au/cathyl3235/">Pinterest</a>

Cathy Love is finally recording and producing The Private Practice Made Perfect Podcast. Its specifically for paediatric allied health professionals, it’s going to be fun. She likes a chat.

Cathy will bring a broad range of energetic people to the conversation. The outstanding guest list includes; allied health business owners, digital marketing specialists, accountants, HR advisers, writers, virtual assistants, IT specialists, friends, social media guru’s, possibly family and other generous folk she hasn’t roped in yet.

It takes a village to run a private practice. Finally we gather the tribe, harness collective wisdom and elegantly deliver it all direct to your earbuds. The plan to is share up all our private practice stories, business know how, wins, challenges and pearls of wisdom. The episodes will be conversational, short, informative and practical. Apologies in advance, it’s highly likely that there will be humour and deviation from the topic.

…But we wish for even more.

Private Practice Made Perfect

Cathy Love is finally recording and producing The Private Practice Made Perfect Podcast. Its specifically for allied health professionals, it’s going to be fun. She likes a chat. Cathy will bring a broad range of energetic people to the conversation. The outstanding guest list includes; allied health business owners, digital marketing specialists, accountants, HR advisers, writers, virtual assistants, IT specialists, friends, social media guru’s, possibly family and other generous folk she hasn’t roped in yet. It takes a village to run a private practice. Finally we gather the tribe, harness collective wisdom and elegantly deliver it all direct to your earbuds. The plan to is share up all our private practice stories, business know how, wins, challenges and pearls of wisdom. The episodes will be conversational, short, informative and practical. Apologies in advance, it’s highly likely that there will be humour and deviation from the topic. …But we wish for even more.

Cathy Love is finally recording and producing The Private Practice Made Perfect Podcast. Its specifically for allied health professionals, it&rsquo;s going to be fun. She likes a chat. Cathy will bring a broad range of energetic people to the conversation. The outstanding guest list includes; allied health business owners, digital marketing specialists, accountants, HR advisers, writers, virtual assistants, IT specialists, friends, social media guru&rsquo;s, possibly family and other generous folk she hasn&rsquo;t roped in yet. It takes a village to run a private practice. Finally we gather the tribe, harness collective wisdom and elegantly deliver it all direct to your earbuds. The plan to is share up all our private practice stories, business know how, wins, challenges and pearls of wisdom. The episodes will be conversational, short, informative and practical. Apologies in advance, it&rsquo;s highly likely that there will be humour and deviation from the topic. &hellip;But we wish for even more.

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