I've posted this in another online community and thought it might be helpful for others in the states or across the pond if you're able to make it:
ALD Breakout Session Call
AMN Men - June 13th
Date & time: Tuesday, June 13th - 7-8pm EST
Click the link to register: events.r20.constantcontact....
About Breakout Session Calls
Every year, patients and their families travel to ALD meetings in order to learn more about the disease, hear about research progress, and create new contacts and friendships. We have heard that the most rewarding part of attending in person meetings is the opportunity to speak to others who are affected by ALD. However, a common request is for more "breakout session" time for patients. ALD Connect hopes to answer this request by holding Breakout Session Conference Calls throughout the year for ALD moms, AMN men and female carriers. Telephone calls will also allow those unable to travel to meetings to participate in the sessions. Each call with have a focus topic to initiate the conversation. Physicians and caregivers may join the calls, although there will be no medical advice provided during the sessions. The time will be dedicated to conversations between patients and family members. Each call will have a monitor who is an ALD Connect member. S/he will begin the call, read our disclaimer, and introduce the call topic. The monitor may also relay any concerns or ideas for future calls back to ALD Connect, so that the consortium can help to address issues and answer questions. All Breakout Session Conference Calls will be done through our ALD Connect Conference Call Dial-In. The calls will be recorded to ensure they run smoothly, however the recording will not be posted or distributed publicly
Chronic fatigue for ladies with AMN/ALD
Any ALD post BMT men or families here?
Do any men with AMN urinate in their beds at night sometimes?
IS IT X-ALD OR AMN AND ARE THERE SIGNIFICANT DIFFERENCES IN QUALITY OF LIFE?
