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2021 RARE on the Road - Rare Disease Leadership Webinar - Shared screen with speaker view
Sara Sharpe
55:44
advocacy
Morgan DeBoth
56:00
Advocacy
Kristie Webb
56:06
learn
Melinda Lipscomb
56:31
tools
Sara Sharpe
57:05
Sara E.B. Sharpe Cincinnati, OH
Christina Brundage
57:05
Christina Brundage - South Carolina
Jennifer Braswell
57:06
New Hampshire
Alanna Yee
57:07
Alanna - Texas
Amy Casey
57:09
Amy Casey from Iowa! Hello!
Melinda Lipscomb
57:12
Melinda - Baltimore, MD
Janeice Kille
57:13
EPennsylvania
Jennifer Roman
57:15
Jen - New Jersey
Carole Scrafton
57:21
Carole from UK
Claire Destrampe
57:21
Michigan!
Morgan DeBoth
57:24
Ohio!
Kristie Webb
57:33
Kristie Webb MS
Lindsey Clark
57:36
Arkansas!
Sarita Edwards
57:45
Sarita - Alabama
Suzanne Martin
58:45
Hello from South Carolina!
Mary Morlino
59:06
For English to Spanish translation of this meeting click this link (https://attend.wordly.ai/join/UVAG-2767). In the new window click the blue "join" button.***Para la traducción al inglés a español de esta reunión, haga clic en este enlace (https://attend.wordly.ai/join/UVAG-2767). En la nueva ventana haga clic en el botón azul "unirse".
Frank Rivera
59:12
Hello from NY
Swapna Kakani
01:01:27
Hi Everyone please remember when messaging in the chat box select "All Panelists and Attendees" that way fellow attendees can see your message! Thank you!
Rose Okoma
01:02:24
Hi from Ivory Coast
Denise Higdon
01:03:04
Hi Sarita! Where in Alabama?
Mary Morlino
01:03:35
Thanks Brenda!
Richie Kahn
01:04:08
What’s up, Parvathy?
Mary Morlino
01:04:17
No worries Eric, you got your point across and we get it!
Joanne Paquette
01:04:31
c
Adrian Palau-Tejeda
01:06:55
Hi Eric, if you post the question in the Q and A I can respond there! Great Question by the way
Mary Morlino
01:07:34
Eric - Burden Study - https://everylifefoundation.org/burden-study/ For more info.
Denise Higdon
01:10:07
Anyone familiar with the National Ataxia Foundation?
Janeice Kille
01:12:23
F
Suzanne Martin
01:12:36
ACDEF
Linda Green
01:12:42
a
Deborah Vick
01:12:47
A, C, D, F, E, D, G
Mary Morlino
01:14:37
Zeba the Webinar is being recorded so you can access the info later.
LISA COLE
01:14:48
I am a support group leader for National Ataxia Foundation (NAF)
Mary Morlino
01:15:24
Megan, that's awesome!
Parvathy Krishnan
01:16:15
so glad you joined us Elisa !
Parvathy Krishnan
01:16:47
megan - that is wonderful. social media has become such a valuable tool for all of us with rare diseases
Adrian Palau-Tejeda
01:16:58
Repasting for anyone who may need it: For English to Spanish translation of this meeting click this link (https://attend.wordly.ai/join/UVAG-2767). In the new window click the blue "join" button.***Para la traducción al inglés a español de esta reunión, haga clic en este enlace (https://attend.wordly.ai/join/UVAG-2767). En la nueva ventana haga clic en el botón azul "unirse".
Swapna Kakani
01:17:05
Hi Everyone please remember when messaging in the chat box select "All Panelists and Attendees" that way fellow attendees can see your message! Thank you!
Alan Ehrlich
01:18:04
Hi everyone. FocusOnRhabdo.org is an educational site for patients, physicians and patients with Rhabomyosarcoma
Parvathy Krishnan
01:18:21
you bet ! I don't think we can ever advocate enough :) my 12 yo did rare across America this year and the gratification he felt meeting others like him was something new for me to watch
Parvathy Krishnan
01:18:50
Hi Alan - much needed. thank you for sharing the website. I hope you can join our Foundation Alliance so we can connect and help you and your organization !
Alan Ehrlich
01:19:14
Will do
Parvathy Krishnan
01:19:54
you bet. we are all here to support you all !
Mary Morlino
01:21:37
Yes love that!
Parvathy Krishnan
01:22:10
YES !!!! Daniel has the best RARE tips to help us all <3
Frances Rodrigues
01:22:53
Being a rare complex patient with 3 rare diseases willing always speak about them every chance I get with health care to start with then to groups to newly dignosed patients
Mary Morlino
01:23:30
Frances, thanks for sharing your voice.
Deborah Vick
01:23:33
@Parvathy Ethan, (turned 11 yesterday) joined me during the Rare Across America meetings. He didn’t speak but was very excited to hear everyone’s stories.
Eric Peterson
01:23:41
Would menke’s disease be a “discovered” individual genetic congenital disorder is whole genome screen done on a new born?
Denise Higdon
01:24:07
Lisa email me. wc6and3@aol.com. ALABAMA Support Group we have
Daniel DeFabio
01:25:28
I so often look back to how glib I was saying “10 toes and 10 fingers” as if that precluded any health challenges. Uggg, the things you don’t know.
Parvathy Krishnan
01:26:22
great point Daniel. our daughter had 6 toes on both feet and 6 fingers on one hand. we were thrilled only to know later that it was a part of a condition
Eric Peterson
01:27:00
Answered own question from Nord database. “Molecular genetic testing for mutations in the ATP7A gene may also prove to be an efficient method of population-based newborn screening.”
Eric Peterson
01:27:32
“Menkes disease is caused by mutations in the ATP7A gene”
Deborah Vick
01:28:58
@Daniel I hear you. I think I asked that too with my kiddos. Though they don’t appear to have my disorders, Ethan’s birth was challenging and immediately after birth had a few challenges. He spent a week in NICU. (Ultimately he seems to be OK. I, do however, remember the fear when he was having challenges breathing.)
Adrian Palau-Tejeda
01:31:16
Please post questions in the Q and A to have them answered and saved for others to view!
Linda Green
01:32:24
WOW Effie! Love you both
Nicolò Cardoselli
01:32:43
Amazing story. Thanks for the insights.
Eric Peterson
01:33:06
NIH GARD Genetic and Rare Diseases Information Center (GARD) source appreciated. Haven’t done searches starting there. Will change my search habbits.
Sarah Tompkins
01:33:20
Thank you so much for such inspiring speeches, Effie and Daniel!
Mary Morlino
01:33:47
Love how Effie uses her power for good and connections <3
Denise Higdon
01:34:05
Two Disabled Disabled Dudes are awesome! (check them ou2I
Mary Morlino
01:34:18
Love the Two Disabled Dudes!
Irene Barrera
01:34:31
Good morning, what percentage probability is it that the children inherit Duchenne muscular dystrophy disease from the affected father?
Mary Morlino
01:34:52
https://twodisableddudes.com/
Adam Johnson
01:35:45
Effie and Daniel...resident rock stars! Thanks for all you do! Effie...I appreciate how you helped me start to share my story more!
Denise Higdon
01:38:30
Mary do you by chance have ataxia?
Deborah Vick
01:39:34
Thank you Effie and Daniel. I always love hearing you all speak and share your stories.
Mary Morlino
01:40:59
Luisa is doing amazing work for the rare community, thank you!
Denise Higdon
01:41:03
Thanks Mary, we're all Stronger Together
Mary Morlino
01:42:40
Shout out to the Spanish speakers attending!
LISA COLE
01:43:17
@Denise, I have Ataxia
Brenda Colmenares
01:46:15
Love this!!! Go Timothy
Swapna Kakani
01:46:56
Timothy this is wonderful! You are a great Sax player.
Frank Rivera
01:47:11
Great job Timothy!
Alyssa Terwall (ELF Staff)
01:47:22
Amazing Timothy! Love this!!
Amy Casey
01:47:27
Awesome job Timothy!
Mary Morlino
01:47:54
Love this Timothy!!!
Lindsey Cundiff
01:47:59
This is awesome - go Timothy!!!!
Alyssa Terwall (ELF Staff)
01:48:24
Thank you Timothy!!
Sarah Tompkins
01:48:35
Fantastic performance, thank you Timothy! 👏🏻
Denise Higdon
01:49:54
@Lisa I have FA. We have Alabama Ataxia Support Group in Birmingham for almost 30 years
Becky Brandt
01:51:16
Wow I had to step away, came back & thought that was recorded music! Very Nice
Elisa Glass
01:51:46
I agree Becky. It was great
Deborah Vick
01:53:28
Great Job Timothy! @Sarah great to see you!!
Sarah Tompkins
01:54:10
You too, @Deborah! Zebra hugs!
LISA COLE
01:54:20
@Denise, wow, doing virtual support group meetings for now. Great Webinar
Denise Higdon
01:54:48
Facebook Friends of the Alabama Ataxia Support Group and also Girlfriends with Ataxia is more active
Kristie Webb
01:57:44
I agree. That is me. I am a one or two in a million patient
Denise Higdon
01:58:00
@Lisa did you do the virtual conference last week?
Kristie Webb
01:58:55
no i wasn't able. I haven't been feeling well,lately. We have had bad weather which affects me
Frances Rodrigues
01:59:34
My genetic disease is G6PDD also born with gentic defects heart and kidneys as a child I was always sick thankfully I got tested now drugs and some foods are serious reactions
Kristie Webb
01:59:41
sorry about that
Deborah Vick
02:00:17
I just hosted a group on Clubhouse …. Topic using Mindfulness, Gratitude and positive mindset within the chronic illness community. (I have this as a recurring events on Wednesdays at 4 pm PST.)
Deborah Vick
02:01:06
@Daniel Thank you for your response. I am definitely struggling getting to the “next level” in trying to share the patient voice.
LISA COLE
02:01:07
@Denise, I attended the conference, no I do not do the conference. You may have seen my meeting details in Girlfriends of Ataxia, I am the Treasure Coast Ataxia support group leader.
Amy Casey
02:01:34
There is no doctor that is more of an expert than a patient that is an expert in their own experience!
Denise Higdon
02:04:35
@Lisa l thought I recognized your name. Awesome
Deborah Vick
02:05:36
@luisa I was just told to start my Tiktok account. :-) I have been slow to start this particular social media method. :-)
Deborah Vick
02:08:32
@Effie How do we apply to get onto you podcast?
Janeice Kille
02:08:43
I am Japanese and many cultures have a local society
Mukti Reddy
02:09:06
@Deborah.......Is Clubhouse only for Apple users?
Deborah Vick
02:09:17
I found it easier to get onto smaller podcasts
Deborah Vick
02:09:56
@mukti yes. I heard its expanding. I believe you need either an apple phone or ipad
Becky Sansbury
02:10:09
Great question regarding consent forms.
Alyssa Terwall (ELF Staff)
02:10:15
luisa@akarifoundation.org
Frances Rodrigues
02:10:25
G6PDD is more of eastern Europe organization is from Italy helpful on chart of drugs and foods that could be a serious complications
Mukti Reddy
02:10:47
Thank you Luisa
Alyssa Terwall (ELF Staff)
02:11:16
Hi Michelle! Here's Luisa's email: luisa@akarifoundation.org
Mukti Reddy
02:11:44
@Deborah. Thank You. I don't have any Apple product but I hope they expand to other mobiles too. It will be a great tool.
Tamara Schryver
02:13:06
@France Rodrigues G6PDD - I have PKD. I think we both have metabolic diseases.
Brenda Colmenares
02:13:56
Go Swapna!
Denise Higdon
02:14:04
I'm way slow. I'm 60 and between my mind and ataxia I love the challenge 😂l definitely didn't grow up with social media but l love it now for a short time daily
Frank Rivera
02:14:11
Hii Swapna!!
Frances Rodrigues
02:17:46
Be Brave together we are stronger
Deborah Vick
02:22:28
@swapna Thank you for sharing as well as addressing the effects of access geographically
Sarah Tompkins
02:22:43
Swapna, you are such an inspirational speaker and advocate!
Mary Morlino
02:22:49
https://everylifefoundation.org/rare-advocates/
Parvathy Krishnan
02:24:25
scenario 1 + 3
Frances Rodrigues
02:25:02
1-3-4
Mukti Reddy
02:25:03
Scenario 1,2,3,4 - I am in Canada
Frank Rivera
02:25:04
3 and 4
Kendall Rump
02:25:06
3 and 5
Daniel DeFabio
02:25:07
1 + 3
Deborah Vick
02:25:13
Senario 3 and 4, and paying out of pocket for many of my treatments
Sara Sharpe
02:25:17
I have expereinced Scenarios 2,3,4, & 5
Sarita Edwards
02:25:36
1 & 3
Mary Morlino
02:26:12
https://everylifefoundation.org/rare-advocates/why-advocacy-matters/
Parvathy Krishnan
02:26:59
https://globalgenes.happyfox.com/kb/article/5-how-to-promote-your-rare-disease-story-through-social-media/
Parvathy Krishnan
02:27:31
Megan here is a possible resource: https://globalgenes.happyfox.com/kb/article/8-using-storytelling-to-raise-awareness-for-your-rare-disease/
Frances Rodrigues
02:29:56
a
Sarah Tompkins
02:29:56
A
Deborah Vick
02:29:57
A
Mary Morlino
02:29:58
Respond to this poll at: https://pollev.com/raretour201 OR text RARETOUR201 to 22333 to join, then text your response.
Theresa Milner
02:30:01
A
Sara Sharpe
02:30:05
A
Parvathy Krishnan
02:30:40
thanks to ELF and rare across America !
Mary Morlino
02:31:03
RDLA State Advocacy Hub - https://everylifefoundation.org/rdla-state-advocacy-hub/
Becky Sansbury
02:31:35
Excellent information presented very effectively. Thank you, Swapna!
Eric Peterson
02:32:22
I there a reasonable way to used the economic burden study to estimated state costs based on percentage of state population to national population - talking to state legislators issue
Deborah Vick
02:32:33
@parvathy So True. Though I was involved in politics way before becoming disabled (my undergrad is in poli sci) the ELF and Rare Across America has made it easy for advocacy as well as California Rare Action Network
Parvathy Krishnan
02:33:34
you are so right Deborah. ELF has done an amazing job making it easier for everyone to understand how and where to come. the one pagers have been helpful. thank you for sharing your experience
Parvathy Krishnan
02:33:59
Hi Hatijah - all of the videos will be posted for everyone to view!
Mary Morlino
02:34:05
Resources used for Rare Across America 2021 including training webinars and one pagers used. https://everylifefoundation.org/rare-advocates/rare-across-america/rare-across-america-advocacy-materials/
Denise Higdon
02:34:21
I've learned it is very important to be respectful but persistent
Mary Morlino
02:35:41
Easy ways to take action! https://everylifefoundation.org/rare-advocates/take-action/
Mukti Reddy
02:38:56
Hi Alyssa, The email to Luisa seems to be incorrect. I sent an email to luisa@akarifoundation.org but it says address not found. Appreciate your response.
Mary Morlino
02:39:13
Swapna Kakani Website - http://swapnakakani.com/
Frances Rodrigues
02:40:00
E
Sara Sharpe
02:40:03
C
Sara Sharpe
02:40:06
B
Alan Ehrlich
02:40:11
E
Janeice Kille
02:40:22
E
Melinda Lipscomb
02:40:26
e
Sara Sharpe
02:40:26
E
Tamara Schryver
02:40:26
e
Suzanne Martin
02:40:52
a
Mary Morlino
02:41:02
luisa@theakarifoundation.org
Mary Morlino
02:41:27
Burden Study - https://everylifefoundation.org/burden-study/
Parvathy Krishnan
02:41:28
For information on navigating the US health system/Financial advocacy: https://globalgenes.happyfox.com/kb/article/270-financial-advocacy-in-rare-navigating-the-u-s-health-system-for-young-adults/
Mukti Reddy
02:42:37
Thank You Kanoe
Mary Morlino
02:42:41
STAT Act - https://everylifefoundation.org/stat-act/
Deborah Vick
02:43:47
Ok totally off topic but thought a number of you can relate… I’m doing a “virtual happy dance” as I have now just been scheduled for my next cervical surgery! (@Sarah I know you can relate! :-) )
Parvathy Krishnan
02:43:48
For anyone wanting to reach Luisa: luisa@theakarifoundation.org
Deborah Vick
02:45:05
Love the layout for the economic burden. Suggestion to my fellow advocates from RDLA …. The economic burden and STAT act (which has now been introduced on the floor) are great followups to advocacy week
Denise Higdon
02:45:11
Is the Burden Study completed now?
Mary Morlino
02:45:38
Newborn Screening - https://everylifefoundation.org/newborn-screening/
Sarah Tompkins
02:46:01
Yay for scheduling your surgery! @Deborah Vick
Parvathy Krishnan
02:46:08
https://globalgenes.happyfox.com/kb/article/27-genetic-testing-is-this-my-path-to-a-diagnosis/
Suzanne Martin
02:47:41
Thank you for this information- so very good and informative!
Mary Morlino
02:47:52
RDLA State Advocacy Hub - https://everylifefoundation.org/rdla-state-advocacy-hub/
Alan Ehrlich
02:47:58
Thank you Swapna!
Kim Stephens
02:48:48
Not seeing the presentation, just Luke and Swapna.
Nicolò Cardoselli
02:49:09
Thank you Swapna, amazing presentation.
Parvathy Krishnan
02:50:12
thank you Loanna for joining us from Greece!
Frank Rivera
02:50:31
Great job Swapna!
Mary Morlino
02:51:02
Love "Do what Swapna said"
Katelyn Laws
02:51:12
Great presentation, Swapna!!
Nicolò Cardoselli
02:51:14
Greetings from Italy
Mary Morlino
02:54:08
Bi-partisan support from Congress for the Rare Disease Community Rare Disease Congressional Caucus - https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-members/
Deborah Vick
02:55:20
@David I saw your question
Deborah Vick
02:56:37
Robin and I are planning to start making videos on this subject as we have been having challenges getting the momentum to share our stories. (I have been on a few podcasts.
Deborah Vick
02:58:26
oops… looks like it didn’t all come through. As we have had challenges getting momentum, we are planning to start something of our own.
Frances Rodrigues
03:01:02
Are we going to have in person visits for Legistatures
Deborah Vick
03:01:19
@Mary It’s taken me some time! I’ve been told to share my stories, write, etc. It’s been a slow going process. I have also officially started the paper work for my non-profit.
Deborah Vick
03:02:00
@frances Pre-covid they were in person. Not sure when that will resume. This past month, they were virtual zoom meetings.
Frances Rodrigues
03:04:09
Glad to be their last year and met wonderful people and connections looking forward to again
Alyssa Terwall (ELF Staff)
03:04:24
Thank you so much Luke! This has been super helpful!
Alan Ehrlich
03:04:45
Thanks Luke - very helpful.
Deborah Vick
03:04:58
Thank you
Tamara Schryver
03:07:10
I hate to ask but….. It seems adult SDDI criteria became more restrictive with the last administration. How would we approach getting back to earlier SSDI criteria for diseases?
Mary Morlino
03:07:56
Great info for how to take action and advocate - RDLA take action - https://everylifefoundation.org/rare-advocates/take-action/
Melinda Lipscomb
03:10:41
Something to add to Swapna's answer - please realize ANYTHING you do is something that is helping.
Parvathy Krishnan
03:11:27
Let's do what we can do is such a great RARE tip !
Deborah Vick
03:12:14
Absolutely!
Mary Morlino
03:12:50
Speaking with your representatives is very powerful and creating a relationship is vital.
Deborah Vick
03:13:59
@David … love your questions. That has been a topic of Robin and myself for years.
Heidi Grabenstatter
03:13:59
A “gentle reminder” is how academics approach it. I think it is a useful approach for everyone to lead with kindness.
Deborah Vick
03:14:54
@Heidi Absolutely! At my in person visits, I used to bring hand stamped tokens with messages of kindness and/or gratitude
Denise Higdon
03:15:09
:It seems like I g
Mary Morlino
03:15:39
It's okay to take your time and start small. You will build confidence and be able to do more next time. You do not have to be an expert on policy, legislation and how things work, but you can take action.
Deborah Vick
03:15:52
@Heidi I plan to followup with some handmade cards. (I’be been a bit delayed bc of health issues)
Frances Rodrigues
03:15:54
Thank you everyone and your time
Tamara Schryver
03:15:56
Thank you!
Deborah Vick
03:16:11
Thank you.
Mary Morlino
03:17:53
If you are between 16 - 30 yrs old, check out: YARR - https://everylifefoundation.org/young-adult-representatives/
Deborah Vick
03:17:56
Barometric pressure changes are REAL!!!
Parvathy Krishnan
03:18:34
How to Become a Proactive Financial Advocate for Young Adults: https://globalgenes.happyfox.com/kb/article/227-global-genes-live-how-to-become-a-proactive-financial-advocate-for-young-adults/
Parvathy Krishnan
03:19:07
Building relationships with your representatives: https://globalgenes.happyfox.com/kb/article/22-building-relationships-with-your-representatives/
Frances Rodrigues
03:19:41
A
Mary Morlino
03:19:42
Respond to this poll at: https://pollev.com/raretour201 OR text RARETOUR201 to 22333 to join, then text your response.
Mary Morlino
03:20:31
Thanks everyone for your responses.
Mary Morlino
03:21:11
Did someone mention artistic skills??RareArtist - https://everylifefoundation.org/rare-artist/
Deborah Vick
03:22:03
@Mary Totally! I use art as part of my mindfulness programs. I love the work they show in this event
Lindsey Cundiff
03:22:36
https://everylifefoundation.org/young-adult-representatives/
Deborah Vick
03:22:55
A & B
Mary Morlino
03:23:04
Respond to this poll at: https://pollev.com/raretour201 OR text RARETOUR201 to 22333 to join, then text your response.
Frances Rodrigues
03:23:04
A
Alexia Plaza
03:23:05
A
Frances Rodrigues
03:23:13
B
Suzanne Martin
03:23:15
d
Frances Rodrigues
03:23:23
D
Nicolò Cardoselli
03:23:34
A
Parvathy Krishnan
03:23:51
Gaining independence as a young adult with a rare disease: https://globalgenes.happyfox.com/kb/article/9-taking-control-gaining-independence-as-a-young-adult-with-a-rare-disease/
Mary Morlino
03:24:24
Thanks for your responses!!
Lindsey Cundiff
03:24:51
https://everylifefoundation.org/rare-artist/
Mary Morlino
03:25:08
Rare Drug Development Symposium Rare Drug Development Symposium - https://globalgenes.org/event/rare-disease-drug-development/
Mary Morlino
03:25:20
RARE Patient Advocacy Summit - https://globalgenes.org/event/patient-summit/
Mary Morlino
03:25:32
Global Genes Orientation - https://globalgenes.org/global-genes-orientation/
Adam Johnson
03:26:02
Awesome work, Timothy!
Nicolò Cardoselli
03:26:30
Thanks Timothy.
Brenda Colmenares
03:26:32
Awesome job Timothy!
Mary Morlino
03:26:35
Thank you all for attending!!!
Lindsey Cundiff
03:26:40
Timothy!!!!!! Thank you for sharing the young adult perspective!
Mary Morlino
03:26:44
Continue to use your power for good!!!
Sarah Tompkins
03:26:44
Thank you all so much!
Frank Rivera
03:26:46
Thank you!!
Claudia Yates Raeford
03:27:04
Thank you for the information. Very Helpful
Suzanne Martin
03:27:07
Thank you so very much!
Linda Green
03:27:10
vey informative. Have a great day!
Frances Rodrigues
03:27:11
stay strong together we are stonger
Kendall Rump
03:27:13
Thank you so much!!
Becky Brandt
03:27:19
THANKS! Wonderful presentation
Deborah Vick
03:27:22
Thank yiu
Parvathy Krishnan
03:27:23
thank you all for joining us !