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Rare Across America 2020 Training Webinar - Shared screen with speaker view
Camron King
22:24
Hello everyone! Camron King, Chair of the VHL Alliance here. Happy to be here.
Sunny Ammerman
22:58
Nice to meet you, Camron!
Shundra Wooten
25:23
Hello! Shundra Wooten. Ataxia patient. Nice to meet you Camron
Katelyn Laws
26:25
Again, feel free to email me if you have any questions! You can reach me at klaws@everylifefoundation.org
Jennifer Thiede
31:56
Great idea about start time!!
Jodi G
37:06
Hi everyone! Dysautonomia / EDS patient - excited for this opportunity.
Jennifer Thiede
39:30
redialing….what does that mean
Sunny Ammerman
40:00
My name is Sunny and I am a Septo-Optic Dysplasia > Optic Nerve Hypoplasia > Panhypopituitarism patient and advocate volunteering for the Rare Action Network in Indiana as community engagement liaison. You can reach out to me at sunshine.ammerman@rareaction.org
chavonne
44:06
Our congressional representative, Kevin McCarthy’s office said they wanted information on the Rare Disease Caucus. How do I get that information and forward it to them?
Sunny Ammerman
45:18
Chavonne, can you ask that in the Q&A panel? You'll be more likely to get an answer there and I wold also like that info. :)
Katelyn Laws
46:22
Chavonne, you will have the opportunity to speak about the caucus during your meetings! If you would like to send information before then, you can refer to our website here: https://rareadvocates.org/rarecaucus/
Katelyn Laws
50:16
Chavonne, please feel free to send them the link I just sent you. They can learn more there! If they want to join, they can email Shannon at svonfelden@everylifefoundation.org
Ify Lingo
52:05
scorecards?
Katelyn Laws
52:30
Ify: these scorecards show you how Member's vote on legislation that impacts the rare disease community
Meredith H
52:45
Telehealth has been a lifesaver for me! I typically attend 2-3 medical appointments/day and often travel 6+ hours several times/week for medical care because I live in a rural area. THANK YOU, RDLA for including this among your focus issues!
Victoria Ledwell
53:57
My first ever zoom meeting. Embarrassed to ask but the default is a muted microphone on my end? I have barking dogs and workers making noise.
Katelyn Laws
55:47
Thank you for answering Rebecca!!
Barby Ingle, BSc Psyc
55:48
We have 9 people at a meeting, are each of us expected to do a 2-min personal story or should we do 1 min from everyone or just pick a few of to share stories and a few to do the 'asks'?
Katelyn Laws
56:56
Barby: That is absolutely up to your group! I would say you should each touch on your personal experiences and then move to asks. You can all coordinate how much time to allocate for each
Ify Lingo
59:02
🙏🏾Thank you Katelyn. Telehealth has helped me continue self quarantine longer. How many asks or one pagers are allowed?
Barby Ingle, BSc Psyc
01:02:29
Awesome!
Jennifer Thiede
01:03:35
Is that 3 - 4 Pacific time?
Julie Marie
01:03:54
If we have 17 people, should we only share a handful of personal stories, otherwise we won’t have time to go over our asks.
Sarah Tompkins
01:07:43
Thank you all so much!
Katelyn Laws
01:17:09
akennedy@everylifefoundation.org
Barby Ingle, BSc Psyc
01:19:19
Great job!
Sunny Ammerman
01:19:21
You all really did a great job! <3
Meredith H
01:19:32
This has been exceptionally helpful. Thank you all!
Katelyn Laws
01:31:42
me: klaws@everylifefoundation.ord
Katelyn Laws
01:31:49
Shannon: svonfelden@everylifefoundation.org
Katelyn Laws
01:31:57
Prime advocacy: Noah@primeadvocacy.org