ALD Connect Announcements

[SongStream]

Please help spread the word:

We are excited to announce that the first set of ALD Connect Community Calls will be starting next week!

Our first three calls are scheduled as follows:

Monday, March 18th 8pm ET/7pm CT:

Symptomatic Men

Facilitated by Brian Chandler

Register here: events.r20.constantcontact....

Tuesday, March 19th 6pm ET/5pm CT:

Cerebral ALD Patients, Families, and Caregivers (Pre- and Post-transplant)

Facilitated by Jesse Torrey

Register here: events.r20.constantcontact....

Wednesday, March 20th 6pm ET/5pm CT:

Young Adults with ALD

Facilitated by Taylor Kane

Register here: events.r20.constantcontact....

Registration is preferred but not required.

Stay tuned for updates about our next three calls:

-Newborn Screening, Young Families, and Parents of Asymptomatic Children

-Symptomatic Women

-Grieving Families

Recognizing that many in our community may identify with several of these groups, we encourage you to dial into as many different calls as you would like.

To join a call, use the toll-free dial-in number for your area below:

USA [phone]

Australia (18) 0005 3310

Netherlands [phone]

New Zealand [phone]

United Kingdom [phone]

Then enter our conference code, which is 483-063-7321.

[Equinney]

Thanks for sharing!! Just registered

[SongStream]

Good to hear. I'll be joining you.

[Equinney in reply to SongStream]

Was informative call for me at least

[SongStream in reply to Equinney]

So glad you had joined! Yes, it was informative and I think of you all when I am challenged. We are not alone is so clear when you are joined by so many others on a conference line. I hope it is continued regularly this time.

[Aaron98 in reply to SongStream]

Shoot! I missed the called yesterday. Would you like to share with us what was discussed?

[SongStream in reply to Aaron98]

Hi Aaron, I didn't think you had joined since I didn't hear you chime in, although I was silent for the duration as there were new participants joining. Topics addressed: balance, fatigue, sexual dysfunction; communicating with spouse/partner, constipation, vitamin D, diet, brain fog, incontinence, bladder/bowel urgency, catheter use, ....

Equinney, help me out here. : )

[Aaron98 in reply to SongStream]

I'm really frustrated with myself, Steve. I very much wanted to participate on this call. Do you know if there is a recording of it, by chance?

[SongStream in reply to Aaron98]

Unfortunately not as there was a disclaimer from the moderator at the beginning stating that the conference call was considered a private affair since trust and privacy are essential to open communication.

But don't worry. I understand that they will keep the momentum going this time around. It may not be long until another call is scheduled.

[Equinney in reply to SongStream]

I think you covered the most of it. I had not planned on talking much, but that changed when my wife gave me a list of things to ask about. I didn’t ask all of them or would have been a 3 hour call I’m afraid. Yes, he did say we would be doing it again soon, and I couldn’t be happier about it. Aaron, I hate you missed it.

If you didn’t figure it out, yes I’m Eric from Arkansas.

[Equinney in reply to Equinney]

Could have turned out like Gilligan and their 3 hour tour, lol

[SongStream in reply to Equinney]

I'm glad you had a chance to talk. I've had the past oppurtunity to do my own show which was possibly why it wasn't renewed. : )