Nemaline Myopathy Support Group


NM Family Meetings

NM Family Meetings 2015

Rebecca Evans, Lauren Quinn and Amy Evans

This was the first meeting of NM'ers in Western Australia. My twin sister Amy and I first started talking to Lauren's mum, Bronwyn, in early 2014 on Facebook after connecting through the Nemaline Myopathy Support Group. Lauren finally joined Facebook in December that year and we instantly made a connection, messaging each other almost every day! After many failed attempts to catch up in person we finally met on the 17th April 2015. It was so nice to meet each other and we will definitely be doing it again! Rebecca

NM Family Meetings 2012

Old friends meeting 2012

Emmett Fuerst with Raymond and Marie Rhodes

NM Family Meetings 2011

New York City

Manny, Greta Kruger, Borach, Dylan, Dawn Kelly (Dylan passed away in 2013)

NM Family Meetings 2008

October 2008: New Zealand visits Scotland

Amanda France is Justin Hills aunt.

NM Family Meetings 2007

August 2007 : Scotland visits Canada

Gavin, Sherry, Dave, Fawkes, Lynda and Alan

NM Family Meetings 2002

October 2002: England visits USA

October 2002: Scotland visits Spain

August 2002: Canada visits Scotland

Danny and Niki finally met another child with NM, Philip Bonvino

Dave, Maite and Alba Montalvo

This was the first of two visits for me to meet Alba. Mum has been three times. Alba passed away in 2012.

Lynda and Alan extended their stay in Scotland an extra day so that we could go up north to watch the Lonach Highland Games. The Games are hosted by Scottish comedian Billy Connolly who is a local landowner. We managed to blag our way through the gate to the main arena without buying tickets. It's amazing what a wheelchair and a few cries of "We can't see much" can do for you!

NM Family Meetings 2001

NM Family Meeting 2001 in Florida

The Salazars and Brandes drove the five hour trip up from Miami on our first Saturday, arriving at our villa around 4pm. After introductions and some lovely presents for me, we all went out to the pool area for a few photos. The girls dipped their toes while Katrina had a swim.
German mentioned the big Derby Race on tv, so we all chose a horse and placed a bet. My nephew Craig won the loot. Everyone had a good chat before dinner and we decided to meet up at Universal Studios next day for a walk around in the mid day sun!
Paula now lives in Arizona, and Katrina got married in 2013.

Brigitte, Lucy, Dorothy with Paula and Katrina sitting

Carole, me, Brigitte, mum and Lucy

Paula, German, Kristina, Lucy, Brigitte, Dorothy Dave, Craig and Marion

NM Family Meetings 1999

September 1999 : Scotland visits Canada and USA

The first person I ever met who had nemaline myopathy was Bruce Kennedy. Bruce lives near Niagara Falls, Canada. I had been chatting with his sister-in-law Leslie for a few months when we arranged to meet in 1999. We met up at the Skylon Tower at Niagara Falls. This co-incided with my trip to meet Laura Pagnani and her family in Michigan. I had been chatting with Laura via email and ICQ for several months. And the idea of a trip to Michigan soon emerged. Mum had an old school friend who lived in Toronto, Canada. So we had a base to stay and explore one of the cities I had always wanted to see. After a couple of days in Toronto, I phoned Laura to arrange a convenient time to spend a few days in Michigan. Mum and I had such a laugh with Tony's family that we vowed to return. So we did! In September 2000. (We were invited.) Everyone got on like old family friends. And the 10 days passed too quickly. Sadly, Tony passed away in April 2008.

Mum, Bruce Kennedy, Me, Leslie, Tim

Bethany, Sherry, Colton, Lisa, Laura and Tony Pagnani

Financial Assistance


The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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