360° SCD Hub | Dr. Rob | Activity https://360scdhub.org/members/dr-rob/activity/ Activity feed for Dr. Rob. Tue, 14 Apr 2026 19:00:28 -0700 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 7dc18d1d06af90016fe4a20591321cf8 Dr. Rob posted a new post. https://360scdhub.org/?p=7960 Fri, 06 Feb 2026 15:07:42 -0700
Cold Matters: Stay Warm if you have SCD

Transcript
Cold Weather & Sickle Cell: Why Staying Warm Matters
Cold weather isn’t just uncomfortable for people living with sickle cell disease (SCD) — it can be a real…

]]> 0 daf7a037b9ecf96380b4889db15f757d Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/1175/#acomment-1176 Tue, 22 Jul 2025 15:46:38 -0700 I love this photo. Partners that care about better outcomes for Sickle Cell Patients. I challenge others to share the app, and build a community of similar colleagues that care.

In reply to - Moses posted an update @ ]]> db654166e219db52f161f1bcdf848d6d Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/1038/#acomment-1058 Tue, 06 May 2025 03:34:25 -0700 Look at Sue’s post a few hours before mine 12 days ago. I was basing my knowledge of the grant on that post in the PDFs that were attached. I have to confess if that’s all I know about the Grant.

In reply to - Dr. Rob posted an update

The local grant announcement is very exciting.

LaDeirdra Harris is right on target with her grant and vision for helping with respite care by tracking resources, patients and needs. […]

]]> e2eb3a5d26c7d81638f7ea49b0c9aec8 Dr. Rob posted an update: The local grant announcement is very exciting. […] https://360scdhub.org/activity-feed/p/1038/ Wed, 23 Apr 2025 20:06:09 -0700 The local grant announcement is very exciting.

LaDeirdra Harris is right on target with her grant and vision for helping with respite care by tracking resources, patients and needs. This app can help her help all of us do a better job. I would be glad to discuss resource and respite matching use functions already built into this app.

]]> 3 2c1ec356e4a2dce0ece1bd88e358c62c Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/1029/#acomment-1032 Fri, 11 Apr 2025 18:57:35 -0700 I agree with the premise in the article, And I wish to reinforce the notion of a patient advocating for themselves. Dealing with someone with unconscious bias is not dealing with a racist, its dealing with a person that is embarrassed and clueless when they discover how they have acted. I have been there wen I realized why the poor in…

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In reply to - Awilda posted an update in the group General Community

Good morning all and Happy Springtime! The two articles attached and the research sources in each may be of interest to you. Enjoy! Wishing you the very […]

]]> 34e952c68b53b77c8dea9567633c1b63 Dr. Rob posted an update: Top 10 Things to Do If You Are Aging with Sickle […] https://360scdhub.org/activity-feed/p/1019/ Fri, 28 Feb 2025 23:01:37 -0700 Top 10 Things to Do If You Are Aging with Sickle Cell Disease

  1. Prioritize Regular Medical Checkups
    • Schedule frequent visits with your hematologist and primary care doctor to monitor organ function, blood counts, and any complications related to aging with SCD.
  2. Manage Pain Effectively
    • Work with your healthcare team to create a comprehensive…

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]]> 2 465538a7cd471828a5008f2097b6b73c Dr. Rob posted a new activity comment https://360scdhub.org/events/2025-scd-quarterly-community-roundtable-advancing-together-in-person-interactive-live-broadcast/#comment-602 Fri, 14 Feb 2025 16:58:23 -0700 f7e2da8d1a6be3ea7b7f42fc607c364f Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/971/#acomment-998 Fri, 14 Feb 2025 16:19:13 -0700 These are great suggestions. Keep them coming.

In reply to - Mark360SCD posted an update

Tips for People Living with Sickle Cell Disease:

  • Take care of your mental health.
  • Talk to your family and friends about how you are feeling.
  • Tell your healthcare team if you feel depressed or anxious.
]]> 60bca0ce169e9dead252419b41213084 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/932/#acomment-934 Mon, 23 Dec 2024 16:13:42 -0700 From cold State College PA with snow scheduled on Christmas Eve like a Hallmark movie, it’s great to be connected with caring professionals like you. What a gift.

In reply to - Awilda to Lthrone @Lthrone

Happy Holidays to you and yours! Thank you for connecting with me. I’m in Tucson, Arizona. Where are you?

]]> 3a4251fae437d45d0c707998a884d597 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/929/#acomment-930 Sun, 15 Dec 2024 00:02:48 -0700 I applaud these parents for advocating for their child, but shame on the school system. Did they reach out through the school nurses who have a group in this app?

In reply to - Awilda posted an update in the group General Community

FYI, in your Profile you can find the section called, “My 360 Charts” where you can privately post what you or your family member is going through to keep […]

]]> 7696dd5a1a4039ae5b8472d539f40cd6 Dr. Rob posted an update: I don't know what it's like where you're at, but […] https://360scdhub.org/activity-feed/p/926/ Thu, 12 Dec 2024 18:43:14 -0700 I don’t know what it’s like where you’re at, but it’s getting very cold here. Don’t forget to stay warm, especially in vulnerable climate with vulnerable body parts such as fingers or toes, ears or nose. Thick socks wear gloves cover up with a scarf. The cold causes the blood vessels to constrict, trying to save body heat, but it makes a…

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]]> 1 975e7d56dca8e5eac0a62f959b863ef5 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/918/#acomment-921 Mon, 09 Dec 2024 21:37:21 -0700 Residents rule! They are an amazing Force for Health.

In reply to - Moses posted an update

BANNER UMC- PHOENIX – Operation Staff & Resident Doctors. So exciting to be connecting with incredible team- Thanks to Dr Newman

]]> d28f26ea39549bb95f500203077db6a8 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/913/#acomment-916 Tue, 03 Dec 2024 18:26:48 -0700 What a great cause and event. I wish I lived closer.

In reply to - Akilah posted an update

We had a great time at the Support & Empowerment meeting on Friday! It was fun to catch up with the individuals that attended. I’m glad everyone had a great Thanksgiving.

We all learned […]

]]> e881327fff0d111253d7fb1ba1c29de1 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/845/#acomment-853 Wed, 09 Oct 2024 00:08:00 -0700 This is a free service that may help with a placement. If you contact them please let us know how it went. I have not used them before . https://www.research.knowrare.com/sicklecell?gad_source=1

In reply to - Abrar posted an update in the group Individuals Living with SCD

Hi, My name is Abrar and I’m a PhD student at ASU living with SDC for more than 30 years. In the last 7 years, I’ve been trying to do Stem Cell […]

]]> 7def5268469d45dcbfd1522a184ba5ff Dr. Rob posted an update: HHS Summit on Sickle Cell is worth the time to hear […] https://360scdhub.org/activity-feed/p/832/ Fri, 04 Oct 2024 11:55:20 -0700 HHS Summit on Sickle Cell is worth the time to hear or watch.

https://youtu.be/Lesg0zfHNCE?si=xQdnvJ0BHE-bpQ1k

]]> 0 17f17e1448c9ad459b4d2758f1ba6986 Dr. Rob posted an update: OXBRYTA® (voxelotor)Bad news...discuss this with […] https://360scdhub.org/activity-feed/p/827/ Sat, 28 Sep 2024 18:40:31 -0700 OXBRYTA® (voxelotor)

Bad news…discuss this with your doctor if you are on this medication. Taper versus abruptly stopping is suggested by some experts.

https://www.pfizer.com/news/press-release/press-release-detail/pfizer-voluntarily-withdraws-all-lots-sickle-cell-disease

pfizer.com

Pfizer Voluntarily Withdraws All Lots of Sickle Cell Disease Treatment OXBRYTA® (voxelotor) From Worldwide Markets | Pfizer

Pfizer Inc. (NYSE: PFE) announced today that it is voluntarily withdrawing all lots of OXBRYTA ® (voxelotor) for the treatment of sickle cell disease (SCD) at this time, in all markets where it is approved. Pfizer is also discontinuing all … Continue reading

]]> 0 efb9a179bc496eecf34dbae9b19b389c Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/750/#acomment-796 Wed, 25 Sep 2024 17:15:12 -0700 Thanks for this post! This is a life changing resource for those that quality.

In reply to - Mark360SCD posted an update Hello,

This could be some valuable information for our Arizona residents.

Best,

Mark

]]> 6363cb5f60cdce711a4913280bd05f2e Dr_Rob recommended the post What Happens When an Overweight Sickle Cell Patient is also Diabetic? https://360scdhub.org/activity-feed/p/734/ Tue, 20 Aug 2024 17:23:24 -0700 0 3dc360036f8c98c1b06256f24de50a4a Dr_Rob recommended the post What Happens When an Overweight Sickle Cell Patient is also Diabetic? https://360scdhub.org/activity-feed/p/732/ Tue, 20 Aug 2024 17:21:47 -0700 0 c5b464c629ea32cf482222bf23cfa342 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/697/#acomment-706 Thu, 01 Aug 2024 20:48:41 -0700 This is a very good suggestion. You didn’t ask, but I couldn’t help myself.. I would work backwards from this with a set of outcomes or goals that must be achieved for sickle cell patients, and then figure out the staffing and the team requirements to meet those outcomes. Then I would explain the need for such a team and staffing, based on…

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In reply to - DrNaomi posted an update in the group Medical Community

Cystic Fibrosis centers are recommended to aim for these FTEs for different providers. I wonder if we can use this to set the same precedent for Sickle Cell centers?

]]> b56a09c3d05a6bd4426918a1109ec672 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/700/#acomment-705 Wed, 31 Jul 2024 19:11:48 -0700 “You are not alone” is so true. There is a whole community of sickle cell patients, families, and providers out there to support you. Invite them into the app.

In reply to - Moses posted an update

June and July were extremely busy and very successful months. Thank you everyone who participated and helped us to be so very successful.

The “Difference you Made, Made all the Difference […]
]]> eb052ffac172acb2c12f33db4e2b556e Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/679/#acomment-680 Mon, 15 Jul 2024 14:54:27 -0700 We have never met but I am so excited that someone with your skill set and financial interest is here. I recently got out of the hospital for a different issue, and I am a physician and former hospital senior administrator, and I can barely figure the regulations and language in my bill, the insurance, the Medicare and how it affects…

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In reply to - lyeishagreer20 posted an update

I am a first-generation college student who is currently enrolled at Grand Canyon University. I am interested in understanding the theories and procedures needed to be […]

]]> ece5495ac8c20723032a8b42a0efa4c3 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/588/#acomment-676 Sun, 14 Jul 2024 20:07:48 -0700 Welcome aboard. This is your portal. Ask what you need to know and share what you do now to fight Sickle Cell stigma in advance the health of sickle cell patients.

In reply to - Kahli12 posted an update

So happy to be here today

]]> 9cc700af013fc983a48db2773958f59b Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/559/#acomment-560 Sun, 16 Jun 2024 01:53:53 -0700 These are a nice album from a great event. I especially like the image with the join for free and QR code. What a great graphic to post to others!

In reply to - SCFA_Coach posted an update ]]> 18de03dc600761a36d5262a1af2156c0 Dr. Rob posted an update: Everyone wins when we learn more about and care about […] https://360scdhub.org/activity-feed/p/509/ Fri, 07 Jun 2024 23:03:55 -0700 Everyone wins when we learn more about and care about sickle cell disease. Please use and share the app . It is so much fun to see the app being launched and I can’t wait to see how it is used and see your posts here.

]]> 0 a80da799100e5c469362fb1489e31b04 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/498/#acomment-507 Fri, 07 Jun 2024 22:54:29 -0700 Everyone wins when we care about sickle cell! Thanks for posting .

In reply to - Kahli12 posted an update

]]> b5dbe5b01183eebb96f90e04473d35c3 Dr. Rob posted a new activity comment https://360scdhub.org/activity-feed/p/499/#acomment-504 Fri, 07 Jun 2024 22:53:38 -0700 Great picture. Thanks for posting!

In reply to - Brandicusc posted an update

]]> c493a79b61dde03d466e947432131e6d Dr. Rob posted an update: Today I am proud to learn of the SCFAZ participating at […] https://360scdhub.org/activity-feed/p/315/ Sat, 16 Mar 2024 17:21:32 -0700 Today I am proud to learn of the SCFAZ participating at the Red Cross BLOOD DRIVE at Tonto Street Church of Christ in Phoenix AZ. They distributed sickle cell information to the public. Did you know your blood can help a sickle cell patient.

]]> 0 f1100cc591e97d388949f0084e0e5641 Dr. Rob posted an update in the group Family Leaders: Families are groups where tips are shared, support is […] https://360scdhub.org/activity-feed/p/176/ Wed, 24 Jan 2024 20:15:10 -0700 Families are groups where tips are shared, support is given, and solutions are put in place. Please use this Group to help your family members and help other families. Here are 90 seconds of my thoughts on this. I can’t wait to see what pictures, videos, suggestions, and discussions are shared.

]]> 0 aa62a73e75e76ce9d89838018ffe6143 Dr. Rob posted an update in the group General Community: Hi. Here are some thoughts from me on how to best use […] https://360scdhub.org/activity-feed/p/173/ Wed, 24 Jan 2024 20:08:10 -0700 Hi. Here are some thoughts from me on how to best use this tool. I can’t wait to see what gets posted and what discussions occur.

]]> 0 47fe330c9553a93d138a709ee718b7e4 Dr. Rob posted an update in the group Medical Community: Hi. Here are some thoughts from me on how to best use […] https://360scdhub.org/activity-feed/p/172/ Wed, 24 Jan 2024 20:07:31 -0700 Hi. Here are some thoughts from me on how to best use this tool. I can’t wait to see what gets posted and what discussions occur.

]]> 0 3ba9f14cedcac1b34a3a660835735204 Dr. Rob posted an update in the group Individuals Living with SCD: Hi. Here are some thoughts from me on how to best use […] https://360scdhub.org/activity-feed/p/169/ Wed, 24 Jan 2024 19:52:39 -0700 Hi. Here are some thoughts from me on how to best use this tool. I can’t wait to see what gets posted and what discussions occur.

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