Wednesday April 14, 2021

The first MSF Virtual Conference is just 87 days away

In early May you’ll be able to register for the first ever Myhre Syndrome Foundation Virtual Conference on 10-11 July. Our global speakers include;

Dr Angela Lin
Staff Geneticist & Clinical Research for the Myhre Syndrome Clinic, Boston, USA

Dr Sofia Douzgou Houge
Senior Consultant, Medical Genetics, Norway

Dr Nicola Brunetti-Pierri
Professor of Medical Genetics, University of Naples, Italy

It is a truly international panel, with over 15 specialists coming together during the two-day conference. There will be a wide range of talks from cardiology & pulmonary to ENT and so much more. We can't wait to learn together and share our experiences, look out for more information soon.

If you want to get your hands on a free registration for the conference and haven’t signed up to the CoRDS patient registry yet, all new registrants from now until 29 April, who complete the process will be entered to win a place.

Buy a Block and Sponsor the MSF Virtual Conference

Individuals or businesses can choose either a small block for $125 or a large block for $300, and your brand or personal pledge will be promoted on our Sponsor Wall and during the conference on 10-11 July, 2021.

Thank you to our wonderful sponsors - your support makes events possible.

Fundraising for MSF just got much easier!

We’re delighted to have partnered with Classy, an international fundraising platform that is now integrated into our website.

You can set up regular monthly donations, create a fundraising event or bring together a team. The great thing about our new platform is that we’ve set up the pages so that they include information about Myhre Syndrome, ready for you to personalize. It also means as a Myhre community we can see what everyone is working towards, cheer each other on and focus our combined efforts on reaching this year’s goal of $250,000.

We’re energized to reach this goal because it will start to put Myhre Syndrome on the map. We’ll attract bigger research grant requests, show the medical community we have big ambition and set us on the path to one day finding a cure for Myhre.

Check out our current campaigns and we’d be delighted to support you with your event so just get in touch!

Katie White - Panel Member for Myhre Syndrome

She was educating medical students about Myhre Syndrome during a live zoom conference and talked everyone through what Myhre Syndrome is and how it affects her life, even taking questions from the floor and answering in her confident, funny and brilliant way. Katie you're an inspiration, we’re all so proud of you and everything you do.

Myhre & Me Podcasts

It’s been a busy month as we also launched our first podcast. In Ep 1, Mady Blouin talked to us about her life and Iolani's journey with Myhre syndrome, including seven open heart surgeries.

Today we’ve launched Ep 2, where Katy Matthews discusses everything from reactions to the diagnosis, how perspectives have changed and her idea for more rare disease support.

We'll be releasing episodes every few weeks and have recorded with families from São Paulo, Brazil to Newcastle, England – we’re definitely an international family!