Team Check-In by

2024-06-04 14:04:49 UTC

My first day at TANGO2 :)

2024-06-04 14:04:53 UTC

CHOP Folks, New docs, team, PCORI team

2024-06-04 14:06:31 UTC

We've had an uptick in new families in the private Facebook group.

anngeffen — 2024-06-04 14:07:00 UTC

Including a family from Iceland.

2024-06-04 14:07:22 UTC

I met a lot of really great families and board members! :) too many positive interactions!

2024-07-02 14:05:10 UTC

I learned so much about all of the families at the conference

2024-07-02 14:05:35 UTC

Building out the TDD Research Learning Network

2024-07-02 14:06:05 UTC

Brainstorming new goals following the conference.

2024-07-02 14:06:12 UTC

The T2 Family as a whole!

anngeffen — 2024-07-02 14:06:23 UTC

A lot of sincere hugs from everyone including our team members!

Getting all of the cycle 4 contracts fully executed by 7/1/24!!

2024-07-02 14:06:43 UTC

I learned a lot about the experiences of the families and kids we work with :0)

2024-07-02 14:06:56 UTC

My first Family Conference!!

2024-07-02 14:07:53 UTC

Dividing and conquering is key & more hands on deck is SO much better!

anngeffen — 2024-07-02 14:08:05 UTC

The logo pieces separately looks like maxi pads :')

2024-08-08 13:35:45 UTC

We accomplish so much more as a team!

anngeffen — 2024-08-08 13:36:11 UTC

Podcast, publications, learning network, birthday campaign and more!

Designed the birthday campaign!

2024-08-08 13:37:04 UTC

I've been feeling super recognized and appreciated lately!

2024-08-08 13:38:00 UTC

Conference videos are up!

anngeffen — 2024-08-08 13:49:53 UTC

Meeting with Shelby to plan Katie's surprise party :)

2024-09-10 13:31:12 UTC

Received new in-kind donations!

2024-09-10 13:32:23 UTC

New diagnosis in UK

anngeffen — 2024-09-10 13:32:26 UTC

Mom signed up child in NHS even though they were still in ICU!

There's an app for that (that = RLN)

deenachisholm — 2024-09-10 13:33:05 UTC

ClickUp

anngeffen — 2024-09-10 13:33:31 UTC

Hoping we can learn this software together to maximize it's capabilities and our team productivity!

Aplos :')

2024-09-10 13:33:34 UTC

Dr. HanJun Kim...super awesome!

deenachisholm — 2024-09-10 13:35:05 UTC

New Chair for Outreach Committee!

anngeffen — 2024-09-10 13:35:12 UTC

Robin Mitchell has agreed to be the new chair!

Workshop 2 final details

deenachisholm — 2024-09-10 13:35:17 UTC

There are 1938938409834 aspects to creating an article on Wikipedia!

2024-09-10 13:35:30 UTC

Cycle 5 LOI on Submittable + AMGEN grant

deenachisholm — 2024-09-10 13:35:41 UTC

Holiday Ambassador - Bec Cohen

anngeffen — 2024-09-10 13:35:48 UTC

Cohen family from Australia have agreed to allow us to highlight Bec!

Final meeting with Amy and Shelby! Got to see Katie as well:)

2024-10-01 13:37:44 UTC

T2RF can acquire funding via our SRAs and venture philanthropy

deenachisholm — 2024-10-01 13:37:48 UTC

Presented on the topic of Board Management among peers (FasterCures)

anngeffen — 2024-10-01 13:38:17 UTC

Lots of new wordpress things!

2024-10-01 13:38:28 UTC

with other rare disease orgs at Global Genes....

deenachisholm — 2024-10-01 13:39:08 UTC

fine tuning our SRAs and other documents

deenachisholm — 2024-10-01 13:39:22 UTC

The budget sheet :')

2024-10-01 13:39:28 UTC

!Candid's Guidestar seal of transparency!

2024-10-01 13:40:04 UTC

?????

deenachisholm — 2024-10-01 13:40:36 UTC

Our conference is a big success!

anngeffen — 2024-10-01 13:40:36 UTC

Had a chance to share with other CZI RAO members about our conference and realized that we do things well!

Board member engagement - Thomas has been very helpful

anngeffen — 2024-10-01 13:42:05 UTC

We've connected with 48 new family members this year!!

2024-11-05 14:36:35 UTC

Recruited a few new volunteers!

anngeffen — 2024-11-05 14:36:53 UTC

Cynthia Garcia, Robin Mitchell, (& working on two more)

All of the TDD warriors in Spain have heart monitors

deenachisholm — 2024-11-05 14:37:00 UTC

Meeting with Robin <3

2024-11-05 14:37:17 UTC

MaJo, Flavia and Agu.... We are truly expanding our reach and I'm excited about the future

deenachisholm — 2024-11-05 14:37:51 UTC

Supported New Families with Recent Diagnosis

anngeffen — 2024-11-05 14:38:25 UTC

We had about 4 new families in the past month. Was able to sign them up for NHS and provide resources!

almost finishing everything for end-of-year campaign!

2024-11-05 14:38:29 UTC

Nothing at the Moment......but a big Thanks to you both for support w/the Conference Proceedings

deenachisholm — 2024-11-05 14:39:06 UTC

with the help of Jean we developed at a really wonderful strategic plan for the next 3 years!!!

deenachisholm — 2024-11-05 14:41:05 UTC

Hearing my brother say great things about the foundation after meeting Mike!

2024-12-03 14:36:58 UTC

Outreach Committee going well (Robin as new chair is awesome!)

anngeffen — 2024-12-03 14:38:20 UTC

A lot about cyber security :0

2024-12-03 14:38:22 UTC

Hannah Driffoll, she's so sweet, super smart and dedicated!!

deenachisholm — 2024-12-03 14:38:39 UTC

Dr. Sam Mackenzie is willing to join the Board!

anngeffen — 2024-12-03 14:39:18 UTC

Life!!

deenachisholm — 2024-12-03 14:39:33 UTC

Put together a historical fundraising/income report for the foundation! Lots of exciting numbers!

2024-12-03 14:39:55 UTC

Getting through my emails since being off for the Thanksgiving holiday!

deenachisholm — 2024-12-03 14:40:43 UTC

Mike/Kasha will be speakers of Baylor's evening with genetics!

anngeffen — 2024-12-03 14:40:58 UTC

We definitely needed the newsletters and they are FAB!

anngeffen — 2024-12-03 14:41:29 UTC

T2RF Budget is almost complete! (Thanks for everyone's help!)

anngeffen — 2025-01-09 14:37:51 UTC

A lot about current TANGO2 research while working on the channel kick off presentation

2025-01-09 14:38:14 UTC

Exceeded holiday fundraiser goal!

2025-01-09 14:38:53 UTC

Robin - Outreach Committee making great strides

anngeffen — 2025-01-09 14:39:33 UTC

Next TANGO2 Talk is scheduled!

2025 Shine a Light on TANGO2!

anngeffen — 2025-01-09 14:40:08 UTC

Kickoff is March 1st. Get ready for launch!

Testing out the new Shine a Light platform!

2025-01-09 14:40:17 UTC

This meeting :) missed you both!

2025-01-09 14:41:16 UTC

Matt Dort launched his Sharing the Love fundraiser again!

anngeffen — 2025-01-09 14:41:19 UTC

Cure VSP loved the AI w/google notebook and made a short video for their community

deenachisholm — 2025-01-09 14:45:06 UTC

Mat Edick - ref: LOS he's all in w/our PCORI efforts

deenachisholm — 2025-01-09 14:46:46 UTC

Surprisingly I'm ok for now

deenachisholm — 2025-01-09 14:48:10 UTC

As of Monday I can say PCORI app

deenachisholm — 2025-01-09 14:49:04 UTC

We recruited new Regional Coordinators!

anngeffen — 2025-02-04 14:32:00 UTC

A lot about the grant writing process! Lotsssss of different parts!

2025-02-04 14:32:39 UTC

BCM/TCH TDD Team...awesome being boots on ground for planning small gathering

deenachisholm — 2025-02-04 14:32:43 UTC

Upcoming Shine a Light on TANGO2 campaign!

anngeffen — 2025-02-04 14:33:12 UTC

The SAL webpages!

2025-02-04 14:33:31 UTC

If I heard correctly...NBS can be done via fibroblast

deenachisholm — 2025-02-04 14:34:28 UTC

CZI Presentation about our grant process (Thanks Deena!)

anngeffen — 2025-02-04 14:34:38 UTC

I have lots of ongoing projects but feeling good!

2025-02-04 14:34:51 UTC

Recruiting 9 grant viewers...4 are new voices...yay!

deenachisholm — 2025-02-04 14:36:07 UTC

Writing birthday cards for TANGO2 kids :') so cute so fun!

2025-02-04 14:36:24 UTC

We do a great job with our online presence! (but this isn't really new)

anngeffen — 2025-02-04 14:37:05 UTC

I second Destiny!

deenachisholm — 2025-02-04 14:37:34 UTC

Seeing how excited the OWU students are to work with us!

2025-04-02 13:35:28 UTC

There's a new TANGO2 Warrior in Florida!

anngeffen — 2025-04-02 13:36:30 UTC

Set up incentives for SAL fundraisers!!

2025-04-02 13:37:21 UTC

TANGO2 Innovation Summit is a go!

anngeffen — 2025-04-02 13:37:50 UTC

Busy but chillin :0D

2025-04-02 13:38:21 UTC

Picnic Health

deenachisholm — 2025-04-02 13:38:34 UTC

Great platform for development of a patient registry!

More participants for Shine a Light! So keep talking about it!

anngeffen — 2025-04-02 13:39:20 UTC

NorthStar IRB - co founder

deenachisholm — 2025-04-02 13:39:24 UTC

Life!!! Emails are crazy rn :)

deenachisholm — 2025-04-02 13:40:25 UTC

FWA application - Yay! $$$

deenachisholm — 2025-04-02 13:41:04 UTC

a lot about web design/accessibility!

2025-04-02 13:41:43 UTC

Getting some momentum for Shine a Light :0

2025-05-13 13:36:13 UTC

what a biorepository is

2025-05-13 13:37:16 UTC

Mom in Australia & Florida

anngeffen — 2025-05-13 13:37:26 UTC

Had a chance to meet with mom and grandma in person! And meet with mom in Australia on Zoom.

Working with a CZI volunteer to share Tyson and Veronica's story. <3

2025-05-13 13:38:23 UTC

Research Stuff: Virtual Symposium Jotform, Canva Genetics Basics, etc... will add to click-up tee tee :)

deenachisholm — 2025-05-13 13:38:51 UTC

TANGO2 UK is picking up momentum!

anngeffen — 2025-05-13 13:39:02 UTC

owu student video project :)

2025-05-13 13:40:35 UTC

UPMC/Talk Pittsburgh will do a story on Martinez family!

anngeffen — 2025-05-13 13:40:44 UTC

Cycle 5 Aggregated Scores...it's 20 pages

deenachisholm — 2025-05-13 13:41:07 UTC

Jenn Canvasser....super sweet she really admires how far we've come in such a short time and wants to keep our relationship going

deenachisholm — 2025-05-13 13:42:28 UTC

Saw Jenn Canvasser said nice things about our org and working with Deena!

anngeffen — 2025-06-03 13:34:32 UTC

went through b-vitamin stories for TANGO2 Banquet site :)

2025-06-03 13:35:22 UTC

reviewing OWU videos so they can be uploaded :0)

2025-06-03 13:36:28 UTC

Med Student Ashton @ Univ of Rochester

deenachisholm — 2025-06-03 13:36:43 UTC

Will be working w/Sam helping out with the Innovation Summit :)

Our NHS is not perfect but has great info and is light years beyond others!

anngeffen — 2025-06-03 13:37:11 UTC

wrote all of the June thank yous and birthday cards (hand is still hurting lol)

2025-06-03 13:37:59 UTC

Shine a Light Celebration Coming up!

anngeffen — 2025-06-03 13:38:06 UTC

Getting Cycle 5/SI SRAs out to researchers

deenachisholm — 2025-06-03 13:38:34 UTC

not work related, but you can suddenly get allergies in your 20's :')

2025-06-03 13:38:48 UTC

Touted TANGO2 RF for 4 days :)

anngeffen — 2025-06-03 13:39:21 UTC

reconciling PCORI budget

deenachisholm — 2025-06-03 13:40:03 UTC

We are on top of our Operations & Processes!!!

anngeffen — 2025-06-03 13:40:52 UTC

I got a scholarship to attend NORD conference in October

deenachisholm — 2025-06-03 13:44:24 UTC

Meeting w Joanne :0D

2025-07-01 13:38:15 UTC

NORD has the oldest Patient Registry Platform

deenachisholm — 2025-07-01 13:38:55 UTC

Reviewing OWU videos when able!

2025-07-01 13:39:07 UTC

Sometimes Patients with 22Q11 Require Research Testing to find T2 (2nd pathogenic variant)

anngeffen — 2025-07-01 13:39:58 UTC

Scott Lovell :) He's a super nice guy and I think he'd be a real resource to the community

deenachisholm — 2025-07-01 13:40:29 UTC

SAL Celebrationnnn and more major donors than previous years!

2025-07-01 13:41:08 UTC

Research Stuff: Mtg w/Destiny today

deenachisholm — 2025-07-01 13:41:12 UTC

The Celebration!

anngeffen — 2025-07-01 13:41:38 UTC

Closing out PCORI

deenachisholm — 2025-07-01 13:41:42 UTC

Start thinking about year-end stuff! (Annual report, Innovation Summit, Year-End campaign, 2026 Conference, etc.!)

anngeffen — 2025-07-01 13:43:04 UTC

TEAM EFFORT: SAL Campaign ($91,238, Cycle 5 & New PCORI!!!

anngeffen — 2025-07-01 13:44:17 UTC

What OHRP means :0D

2025-08-12 13:34:16 UTC

finished thank you cards for Shine a Light donors :')

2025-08-12 13:35:33 UTC

What it's like to navigate London with a T2 young adult!

anngeffen — 2025-08-12 13:35:42 UTC

Research Symposium To Dos

deenachisholm — 2025-08-12 13:36:53 UTC

Checking jot forms: Speaker Info & Speaker Proposals

Website development

E-blasts

Lynn and Joanne crack me UP

2025-08-12 13:37:17 UTC

The Hull family in person!

anngeffen — 2025-08-12 13:37:31 UTC

hero highlight ideas for newsletter?

2025-08-12 13:38:08 UTC

SAB Innovation Summit Invitee List

deenachisholm — 2025-08-12 13:38:09 UTC

Just getting through our tasks that may creep up on us (annual report, year-end fundraising)

anngeffen — 2025-08-12 13:38:38 UTC

Merit increase/annual reviews for our team!

anngeffen — 2025-08-12 13:39:36 UTC

Donna from T2RF SAB & 22q11.2 Foundation

deenachisholm — 2025-08-12 13:40:14 UTC

Banquet prep is going well and tickets launched!

2025-09-02 13:39:06 UTC

TANGO2 Australia is getting going!

anngeffen — 2025-09-02 13:39:45 UTC

Lots of good feedback from SAL fundraisers!

2025-09-02 13:39:53 UTC

TDD maybe a target for ASO therapies

deenachisholm — 2025-09-02 13:40:00 UTC

Kavya D. an external grant writer

deenachisholm — 2025-09-02 13:40:59 UTC

TANGO2 Research Symposium

deenachisholm — 2025-09-02 13:41:45 UTC

Supported UPMC/Martinez family with Talk Pittsburgh story

anngeffen — 2025-09-02 13:42:14 UTC

2025-09-02 13:42:26 UTC

Cycle 5 grant stuff! T2RF website live!

deenachisholm — 2025-09-02 13:42:39 UTC

Finished 2 pages in annual report! (yay!)

anngeffen — 2025-09-02 13:43:15 UTC

Lots going on but feeling good!

2025-09-02 13:45:00 UTC

Need to start the Symposium program (almost forgot about it!)

anngeffen — 2025-09-02 13:50:05 UTC

Some web skills thanks to ChatGPT!

2025-10-07 13:36:08 UTC

Learned how to connect GoDaddy with our word press page.

Nikita Gogate

deenachisholm — 2025-10-07 13:36:28 UTC

Research Symposium Stuff

deenachisholm — 2025-10-07 13:36:48 UTC

Working with Kallia for her daughter's bday fundraiser!

2025-10-07 13:37:00 UTC

Lainey's talking!!!

2025-10-07 13:38:20 UTC

Childcare is expensive ($13,000-$14,000? WOW)

2025-10-07 13:38:54 UTC

There is a new TDD genotype - phenotype correlation!

deenachisholm — 2025-10-07 13:42:09 UTC

deenachisholm — 2025-10-07 13:43:49 UTC

Innovation Fund is not done yet but we made a lot of progress! (& Great convo with Driffils!)

anngeffen — 2025-10-07 13:44:05 UTC

Renewed UPMC Sponsorship for 10K!

anngeffen — 2025-11-05 14:35:09 UTC

Seeing everyone at the Banquet!

2025-11-05 14:40:35 UTC

Everything went smoothly for the Banquet using Raisely!

2025-11-05 14:41:41 UTC

Milken Institute Scholars & Coaches

deenachisholm — 2025-11-05 14:42:05 UTC

Banquet - a lot of things that made a difference! (room layout, cadence of "ask", etc.)

anngeffen — 2025-11-05 14:42:26 UTC

Making me a manager in the shared drives that need moved <3

2025-11-05 14:42:51 UTC

TANGO2 family & Mike/Kasha's Community!

anngeffen — 2025-11-05 14:44:40 UTC

There's pharmacogenomics straight to consumer testing

deenachisholm — 2025-11-05 14:46:12 UTC

Year-end stuff - budget, annual report, Innovation Fund, Innovation Summit!

anngeffen — 2025-11-05 14:46:54 UTC

Idk....there's soooo many things

deenachisholm — 2025-11-05 14:47:48 UTC

Awesome Research Symposium - Thanks Team :)

deenachisholm — 2025-11-05 14:48:53 UTC

hero highlight/conference sponsors

2025-12-09 15:04:39 UTC

Strong Grant Cycle 6 Launch

deenachisholm — 2025-12-09 15:05:02 UTC

Lot of great year-end things happening!

2025-12-09 15:05:21 UTC

Smaller Research Admin task

deenachisholm — 2025-12-09 15:06:34 UTC

New Shine a Light Ambassador! Brynlee!!!

anngeffen — 2025-12-09 15:07:41 UTC

Year-end mailer dropped!

anngeffen — 2025-12-09 15:08:20 UTC

You can design websites on Canva

2025-12-09 15:08:40 UTC

TDD acute care guideline work group leads

deenachisholm — 2025-12-09 15:08:46 UTC

Forward, post, email, share, like, comment on any year-end giving/Innovation Fund Campaign posts

anngeffen — 2025-12-09 15:09:28 UTC

Chatgpt integrations (Canva)/Magic backgrounds

deenachisholm — 2025-12-09 15:10:21 UTC

Feeling super appreciated and lucky to be a part of this team! Everyone is doing great <3

2025-12-09 15:10:23 UTC

Just feeling very appreciative of our team! We are accomplishing so much!

anngeffen — 2025-12-09 15:12:16 UTC

Mike looks like George Clooney

anngeffen — 2025-12-09 15:12:41 UTC

We nearly doubled our year-end fundraising goal!!

2026-01-06 15:06:16 UTC

Our YouTube views this year were 249% higher than last year!

2026-01-06 15:07:29 UTC

Year-end final numbers are in - LOOKING AMAZING!

anngeffen — 2026-01-06 15:08:01 UTC

Let's get the conference site up & annual report done!

anngeffen — 2026-01-06 15:08:49 UTC

how to code on Raisely :0D

2026-02-03 15:09:41 UTC

Let's get Rare Disease Month/Day/Shine a Light on TANGO2 energy up! (Facebook cover, registration, videos submitted)

anngeffen — 2026-02-03 15:10:53 UTC

Helping Rebekah Rowe with her SAL FB cover pic :)

2026-02-03 15:11:00 UTC

Grant Reviewer COIs in Submittable/JotForm Surveys

deenachisholm — 2026-02-03 15:11:01 UTC

SAL and Conference launching and Annual report! GO TEAM!!!

2026-02-03 15:12:09 UTC

Dayane's email about our annual report!

anngeffen — 2026-02-03 15:12:11 UTC

Nothing rn, surprisingly...this is a period of calm before the storm

deenachisholm — 2026-02-03 15:12:41 UTC

Any SAL site feedback! Also Hero Highlight ideas?

2026-02-03 15:12:56 UTC

YES! Go team on launch two websites & the annual report!

anngeffen — 2026-02-03 15:15:33 UTC

Engaging our community in Research is like pulling teeth...need ideas

deenachisholm — 2026-02-03 15:15:34 UTC

Agu/Georgia....super nice & appreciative of T2RF support

deenachisholm — 2026-02-03 15:17:30 UTC

People are really excited about the conference!

anngeffen — 2026-02-03 15:17:36 UTC

New families attending the conference!

anngeffen — 2026-03-03 21:45:59 UTC

Did a presentation for FasterCures/Milken Institute Community of Practice - Expertise

anngeffen — 2026-03-03 21:47:24 UTC

More registrants for our biggest campaign of the year!

anngeffen — 2026-03-03 21:48:12 UTC

New Zoom features! (Thanks Destiny!)

anngeffen — 2026-03-03 21:49:50 UTC

We can stream the Family conference!! (Excited this will be a game changer)

deenachisholm — 2026-03-03 21:51:09 UTC

Veronica Jones Swetek (Thea's mom)

deenachisholm — 2026-03-03 21:52:59 UTC

Pushing attendance, travel grant, abstract and emerging researcher submissions for the Family Conference (deadlines quickly approaching)

deenachisholm — 2026-03-03 21:54:43 UTC

Successful Cycle 6 Submittable submissions & building out a new mechanism (T2RF Voices in Research & Clinical Care Travel Grant)!

deenachisholm — 2026-03-03 21:56:41 UTC

Lots about human research protection

2026-03-04 14:07:26 UTC

Blog post/newsletter hero highlight

2026-03-04 14:11:02 UTC

Extra team support last week <3

2026-03-04 14:13:58 UTC

Successful SAL Kickoff!!

2026-03-04 14:14:51 UTC

Helping my sister sign up to fundraise for SAL!

2026-04-07 12:02:43 UTC

major donor psychology/messaging

2026-04-07 12:08:33 UTC

designed a postcard for past SAL fundraisers!

2026-04-07 12:09:29 UTC

Chillin like a villain! Hero highlight/OOO next week.

2026-04-07 12:11:23 UTC

Got our book keeper squared away!

anngeffen — 2026-04-07 12:56:42 UTC

Ron Bartak's (FARA) story similar to T2RF's

deenachisholm — 2026-04-07 13:26:08 UTC

He'll be at the TANGO2 conference...don't forget to say hello :)

Andrew (Andy) Wiese (BCM psych doc) super interested in TDD

deenachisholm — 2026-04-07 13:30:48 UTC

He'll be a part of the new PCORI if we get funded.

Not sure...but I WILL ask...ha!

deenachisholm — 2026-04-07 13:39:26 UTC

PCORI LOI submitted!!

deenachisholm — 2026-04-07 13:44:22 UTC

Fingers crossed!!

Montclair Univ - Dr. Bose & Nutrition Team

deenachisholm — 2026-04-07 13:50:25 UTC

Zhi-Yi Shu - Master Thesis presentation (TDD, Nutrition & symptom correlation)

New families that are attending the conference!

anngeffen — 2026-04-07 13:51:39 UTC

Targeted asks to register for our Shine a Light campaign!

anngeffen — 2026-04-07 13:52:36 UTC

A great resource is: Disability Language Guide

anngeffen — 2026-04-07 13:58:11 UTC

Over 50% of the way to our SAL goal!

2026-05-05 13:02:45 UTC

Helping the Spanish Speakers team set up their fundraising page

2026-05-05 13:04:18 UTC

Our email stat are excellent in all categories!

2026-05-05 13:07:19 UTC

Submittable New Features

deenachisholm — 2026-05-05 13:49:36 UTC

Now you can easily track who's doing what!!

Dr. BC Wang

deenachisholm — 2026-05-05 13:56:44 UTC

Recently published on TDD he and his colleagues are from China.....donated $250 to shine a light

Family Conference Stuff

deenachisholm — 2026-05-05 13:58:49 UTC

1) Virtual Reg

2) Program/Agenda

3) Poster printing

New family that registered for conference!

anngeffen — 2026-05-05 13:59:50 UTC

New Foundation funding Arm!

deenachisholm — 2026-05-05 14:00:30 UTC

T2RF TDD Pathways Research Grant - $15k for early learners

Swetek Fundraiser exceeded goal!

anngeffen — 2026-05-05 14:00:46 UTC

New participants registered!

anngeffen — 2026-05-05 14:03:01 UTC

Key note speaker!

anngeffen — 2026-05-05 14:08:54 UTC

I got the scholarship to go to NORD!

anngeffen — 2026-05-05 14:15:48 UTC

Group accomplishment: Registration numbers are up for conference! YAY!

anngeffen — 2026-05-05 14:19:58 UTC

Canva codinggggggg

2026-06-02 13:11:59 UTC

Shine a Light registration and fundraising push

2026-06-02 13:13:05 UTC

Conference sponsorship from Ultragenyx!

2026-06-02 13:14:37 UTC

everyone is doing GREAT! <3 :) LET'S GO TEAM!

2026-06-02 13:19:05 UTC

Tango2 UK (The Driffills)

deenachisholm — 2026-06-02 13:48:03 UTC

Poster Abstracts are Published & Online!!

deenachisholm — 2026-06-02 13:53:00 UTC

https://journals.sagepub.com/doi/10.1177/26330040261451039

We can connect 22Q TANGO2 Patients with Donna (Thanks Deena!)

anngeffen — 2026-06-02 13:56:17 UTC

Got Lainey out of the hospital!

anngeffen — 2026-06-02 13:57:50 UTC

Encourage fundraisers to post online and email friends/family!

anngeffen — 2026-06-02 13:59:15 UTC

All conference vendors confirmed (AV, childcare, posters, social media, Chris Holder)

anngeffen — 2026-06-02 14:00:32 UTC

Other Rare Orgs look up to us and want to learn from us!!

deenachisholm — 2026-06-02 14:03:19 UTC

Accommodating last minute Conference requests

deenachisholm — 2026-06-02 14:06:45 UTC

Daniella is hired!

anngeffen — 2026-06-02 14:35:09 UTC

We exceeded our 100K SAL fundraising goal! GO TEAM!

anngeffen — 2026-07-07 13:56:34 UTC

SOOO many with families and everyone at the conference!

2026-07-07 13:57:04 UTC

We really ARE growing our community!!!!!!!!!!

anngeffen — 2026-07-07 13:57:34 UTC

SAL fundraising and SAL celebration!

2026-07-07 13:57:57 UTC

Let's capitalize on the momentum!!!

anngeffen — 2026-07-07 13:59:39 UTC

One Band...one sound

2026-07-07 14:00:14 UTC

All of the participants I talked to at the conference are extremely vested in our Community. Lots of projects in the pipeline

A lot of our community are wanting to get more involved!

2026-07-07 14:03:04 UTC

SO MANY! But one of my favorites: Dr. Lujan said it was his favorite conference and the BEST conference!

anngeffen — 2026-07-07 14:03:50 UTC

All of the proposed projects

2026-07-07 14:07:29 UTC