Newsletter May 2015 v.1



We hope that all of our warrior moms, grandmas, aunts, caregivers, nurses, dads, and kids--okay just everybody-- had a wonderful Mother's Day this year! Thank you for nurturing your own families and for being a pillar of support for our larger community.

And This Year's Theme Is...


2015 Conference Theme


We are proud to announce the theme for this year's conference is "Anchors & Oars: Strength for Today, Hope for Tomorrow." 


Thank you to Debbie Majeau who helped to inspire this theme when she created lovely holiday ornaments as a fundraiser for the conference with the slogan "Strength for Today, Hope for Tomorrow". The saying resonates strongly with our mission and we are grateful for Debbie's light and love in the community and for her contributions and participation with the past two family conferences!


Thank you to Mark Ward, our official MTM-CNM Family Connection Treasurer and unofficial technology/art/design guy, for the incredible logo. We have a community abounding with gifts, indeed.


The conference theme "Anchors & Oars: Strength for Today, Hope for Tomorrow" really pinpoints our passion to equip families with the connections and resources that will help them stay strongly "anchored" while coping with the day to day challenges--big and small-- brought by MTM and CNM. At the same time, we are very excited about what the future may bring with regards to possible treatments.  We aim to help families to "grab an oar" and together move forward with hope, whether that be towards a cure, or for our families who have lost a loved one, carrying forward their legacy.  

New Photos for the Audentes Patient Advocacy Website


Matt Patterson and Emi Vasquez

From Barbara Weubbels, Vice President of Patient Advocacy at Audentes: 


Would you like your son's story to be included on the Audentes Patient Advocacy website? We will be telling the story of six more boys with XLMTM in the coming year. Levi Gershkowitz, a professional photographer who focuses on patients with rare diseases, will be at the MTM-CNM Family Conference to meet with you and to get to know your son and your family.

The website photographs will be taken in your home at a mutually arranged date.

If you are interested, please send the following information before the conference:

  • Child's name

  • Age

  • City in which you live

  • Why you would like your child's story told- one paragraph

Please email this information to Barbara Wuebbels, Vice-President of Patient Advocacy at Audentes Therapeutics at

The deadline for applications is July 1, 2015.


If we receive more than six letters of interest, we will draw names at the Family Conference.  

The MTM-CNM Family Conference planning team would like to add a special note of thanks to Audentes for the very generous financial contribution to our conference as a Diamond Level Sponsor.
We look forward to seeing members of the phenomenal Audentes team at this year's conference!

Family Fundraising


As a "family" conference, we love to see our attendees personally invest themselves in helping this amazing event take place and to continue our mission of connecting families to resources, research, and relationships! 

Randi's THIRTY-ONE GIFTS Fundraiser:

Austin Cook is an amazing little boy. He is 4 years old and loves, cars, trucks, trains, his iPad, walks, and camping. He was born with a rare genetic muscle disease called Myotubular Myopathy (MTM1). He spent about the first year and a half of his life in Children's Hospital of Philadelphia. He overcame many respiratory illnesses, along with other complications. He now has a tracheostomy, G-tube, oxygen as needed, and is on a ventilator to help him breath. He is also getting stronger every day and amazing us with everything he does. His attitude is a "typical" 4 year old! Austin is also learning sign language and also uses a communication device. He also spends time in his stander, power chair, and gate-trainer walker. He also is extremely lucky to have his 6 year old sister, Peyton. This year is the upcoming 2015 MTM-CNM Family Conference. It was set up by families who are affected by this disease. The proceeds from this THIRTY-ONE bag fundraiser will go towards the conference. It will help with bringing down the costs for families to attend, supplies, and meals. It is an amazing event that we are fortunate to attend. So far there are over 30 families that have committed to attending the conference, along with doctors and researchers from around the world. Thank you for all of your support.

Raychel's PAMPERED CHEF Fundraiser: 
We also wish to extend our deep thanks to Raychel and her friends for their recent and very fun Pampered Chef fundraiser! You guys are great and much appreciated!

Coming Soon

Please keep an eye out for our next newsletter, which will come out soon and will include the formal registration form for our conference attendees.
We are so excited to see all of you who can make it to the family conference in July!

The MTM-CNM Family Connection team!

In This Issue
A Few More Thank You's!
The MTM-CNM Family Connection is grateful for the generous donation of $1000 from the Joshua Frase Foundation, a long-time promoter and funder of MTM and CNM research, and we are grateful to Where There's a Will There's a Cure, another very active and successful research fundraising organization, for their wonderful gift of $1000 as well.

Even though each of our organizations is a distinct, independent entity, we are supportive of each other's work and goals, which speaks well to the unity of our "tribe." Our conference planning team applauds both organizations' accomplishments, which have benefitted individuals and families affected by this condition! 

If you are interested in helping to raise funds to cover the costs and expenses for what is looking to be our biggest family conference yet, one simple way to do so is by joining our fundraising on Crowdrise.

It takes a few moments to set up your account and then all you have to do is share the link via email or social media, so that your friends and family can make their tax-deductible donations!

Our conference planning team is deeply grateful to all of the families currently participating and supporting us on Crowdrise!