Thursday, April 2, 2020

Staying Connected to Kids When You Can’t See Them In Person

While we are all at home, I'm obviously quite busy juggling my three kids, who are now 7, 5, and 2. It's a lot of work for sure! 

But I know there are plenty of people who have to be separated from children that they care about, whether it's their grandchildren, nieces and nephews, godchildren, or the children of close friends. These relationships are important - both to the child and to the adult - so I've written an article with some ideas for staying virtually connected to kids when you can't see them in person. 

And if you have kids of your own? Maybe you can forward this article to friends and family members and earn yourself a little break!

RheumatoidArthritis.net

Saturday, March 21, 2020

Take this quick survey to help scientists look into plaquenil as a potential coronavirus treatment!

Many people in the arthritis community have already heard this interesting news: hydroxychloroquine (Plaquenil) - a medication routinely used to treat rheumatoid arthritis, juvenile idiopathic arthritis, and lupus - is now being considered as a potential treatment for COVID19. 

Stefano Volinia, a scientist at the University of Ferrara in Italy, is interested in learning more about this potential treatment. He sent me an email saying that he thinks scientists can learn a lot about the efficacy of this drug towards COVID19 simply by assessing the spread of the virus among patients who already use these medications routinely. He asked me to share a quick survey - only 3 questions, plus age and gender - with my community of individuals living with arthritis to help with their efforts. Here is his message:
Help the world fight Coronavirus!

Do you use Plaquenil, Aralan, or chloroquine?

A common drug, called Plaquenil, has been shown by scientists to block the coronavirus in test tubes. Many people worldwide use this drug, or its generic hydroxychloroquine (HCQ), to treat lupus erythematosus or rheumatoid arthritis. Other people use a similar drug (Aralen), chloroquine, for malaria or Amebiasis.

I work at the University of Ferrara (Italy). Like many other nations in the world, we are now hit hard by coronavirus. The hospitals are more and more stressed by the ever increasing number of patients. The pandemic is now expanding worldwide. Large scale studies for the efficacy of this drug against Coronavirus are not yet available. Even if you are not using any of these drugs, you can be part of the solution!

Simply answer 3 questions and help to stop this deadly disease, called COVID-19!

Many thanks!

Please share this survey with anyone who might be able to help!

Friday, March 13, 2020

LaGrippe Research Opportunity for Patients with RA or PSA

I wanted to share an opportunity to participate in paid research with LaGrippe Research for patients living with rheumatoid arthritis or psoriatic arthritis. 

I've communicated with Alex Lampe at LaGrippe Research, who told me that all information shared through this study will be used for research purposes only, and will be kept strictly confidential. This is not a clinical trial and at no point will anyone be selling anything. The study itself is a double blind study. Results will be used to advance knowledge, marketing, and understanding within the field of arthritis research. 

As an additional disclosure, LaGrippe has agreed to compensate me $25 per person who qualifies through the link below and participates in the study. If I receive any compensation for this project, it will go towards funding additional resources for Mamas Facing Forward - I am particularly interested in having funding so I can pay the writers that contribute to the site! 

Here is the info from LaGrippe about the study:

Hi! We're LaGrippe Research and we're currently working on an Rheumatoid/Psoriatic Arthritis Study. We're looking for individuals who wish to share their personal journey with arthritis to participate in a 45-minute web assisted phone interview. Those that qualify and participate will be compensated $100 as a thank you. We will be conducting these interviews March 16th through March 31st.

If you are interested, please fill out our preliminary questions online here: https://www.surveymonkey.com/r/NWZY73V 

If you have any questions, please contact Alex at 224-360-7929 or email alexander@lagripperesearch.com 


Wednesday, March 11, 2020

Rheumatology Nurses Society Psoriatic Arthritis Project

I wanted to share an opportunity for patients living with psoriatic arthritis (PsA) to contribute to a project with Rheumatology Nurses Society (RNS). I agreed to spread the word because I think RNS is a great group of healthcare providers doing important work towards giving patients more of a voice within healthcare, and I think the program they are offering could be beneficial to patients living with PsA. I have not been compensated for sharing this information. Here is the information I have been given about this project:

We are launching a brand-new program this month that is entitled Dear Diary: Unlocking the Secrets to Better Care of Patients with Psoriatic Arthritis. We are looking for 50 patients with psoriatic arthritis who are interested in participating in this 12-week initiative.

In this program, patients will complete a weekly online diary entry where they will be encouraged to write about a variety of topics related to their disease. Weekly prompts will offer suggestions on various topics to tackle, but participants will have the flexibility to write about anything on their mind that is related to their disease. Please note that, at least in this initiative, we are only enrolling patients with psoriatic arthritis. There may be opportunities for patients with other rheumatic conditions in the future.

Each enrolled patient will be paired with one or more healthcare providers. These providers will not receive any information related to the identity of any patient beyond their first name. They will only receive an email when their matched patient has submitted a diary entry, and they will then be asked to write a response. Due to privacy concerns, provider responses will not be shared with participating patients directly. However, our project administrator (me) will review all diary entries and compile an electronic document at the end of this project that contains a variety of patient diary entries and provider responses so that all participants can get a sense of what patients with psoriatic arthritis have been writing about and how the healthcare provider community responded to some of the challenges they have been reading.

Our hope is that participants will find that jotting down their feelings and emotions while emptying out some of the clutter in their head will be extremely helpful. Our hope is that participants will submit one weekly diary entry during each week of this project. It is OK to skip a week or two as personal circumstances arise, but we’d like to find participants who will be as active as possible on our platform.

Anyone interested in participating in this project can click here (https://www.surveymonkey.com/r/KNP8575) to enter their contact information. We hope to complete enrollment and begin this project within the next 2 weeks, so someone will contact folks who register shortly. If anyone has any questions or would like any further information, they can feel free to contact Sadie Montanus, RNS Education Coordinator, at sadie.montanus@rnsnurse.org.     

Tuesday, January 7, 2020

Everyday Health's "10 Arthritis Blogs to Watch in 2020"

Happy New Year! I'm honored to kick of 2020 by sharing that I've been featured on Everyday Health's list 10 Arthritis Blogs to Watch in 2020. It's an honor to be featured alongside these other amazing bloggers, who are both honest and uplifting when it comes to life with arthritis.