Dear FACES of Colorado/Wyoming Community,

We began our Kickoff Meeting on January 31, 2010 with some social time. Children played in the basement with our volunteers, Robert and Beth– Thank you!

 

Pat Furlong talked a little bit about the upcoming PPMD Annual Conference, to be held at the Denver Marriott City Center from June 24-27. Because this conference has become one of the premiere DMD conferences in the world, the format is changing a bit. Now, the Annual Conference will be organized along three separate but interwoven tracks; one for scientists and researchers, one for parents and families, and one for allied caregivers such as nurses, therapists and other clinicians. Any person registered for the Conference may attend any segment along these tracks, however the topics are specifically geared to each audience. Scholarships to the Annual Conference are available for a limited number of Colorado and Wyoming Families.

 


Pat also updated the group on current research and clinical trials. The most important thing we can do to further research right now is to register and keep current with Duchenne Connect. Duchenne Connect is a database for boys and girls with a diagnosis on the Duchenne/Becker spectrum as well as carriers of DBMD. The Duchenne Connect team can assist you with genetic testing information as well.  www.duchenneconnect.org

 

Ryan Fischer reminded us that our PPMD Advocacy Conference is February 21-23 at the Marriott on 1221 22nd Street NW in Washington DC. Many families will be meeting with their Senators and Representatives to Congress as part of this conference. However, much can be done locally or even from home. Remember, these are our representatives whom we elect to serve the needs of our communities. Contact Ryan at 1-800-714-5437 or ryan@parentprojectmd.org for help with talking points for your appointments, phone calls, letters and emails.

 

Each invitee to the meeting received a small packet of information, including a tentative schedule of our CO/WY FACES events for 2010. If you would like a copy of this packet, please contact Angela. Also, if you have suggestions for certain topics to be addressed in our informational meetings, please let us know. Likewise, if you have experience with a topic that you would like to present at one of these meetings, please step forward! We families are the experts on living with Duchenne.

 

We concluded our first FACES meeting by participating in a focus group reviewing prototypes of the new CDC Care Considerations handouts for parents. The consensus opinion from our group is that while format needs a significant amount of improvement, the content needs to be sent back to the drawing board. We found major errors of tone, fact, organization and spelling. We suggest using more parent focus groups as well as clinical data in the creation of revised content.

 

Thank you to all who came to the kickoff meeting of our Colorado/Wyoming FACES group. It was great to see such a roomful of enthusiastic, supportive and positive DBMD families. See you in March when we meet the Muscle Clinic staff at The Children’s Hospital Denver!         

 

Ivy Scherbarth Ivy.COfaces@parentprojectmd.org

Angela Knight Angela.COfaces@parentprojectmd.org

 

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