Author Archives: Sascha Gallardo

In this update, we’re sharing some information about Fabry that you can forward to friends to help raise awareness this month. 

Also check out some of the things that patients with chronic illnesses like trigeminal neuralgia and systemic lupus erythematosus might be experiencing and how friends and family can possibly help. 

1. April is Fabry Awareness Month

This month, help spread awareness about Fabry so that more people could be diagnosed earlier and receive appropriate treatment. 

2. An Unspoken Conversation between a TN patient and Her Son

Chronic illnesses can affect a patient’s relationship with a loved one, but it doesn’t have to be a negative effect. What could be a good conversation between a patient and a family? 

3. Some things to understand about systemic lupus erythematosus (SLE)

Know anyone living with SLE? Check this blog and find out some of the ways you can help.

4. Chan-Zuckerberg Rare as One project EDs Tom and Clasina are preparing a grant application to the Chan-Zuckerberg Rare as One project. They would appreciate hearing from you if you have any insights, “ins” or advice on this. 

In this update, find out what Ben shared in the podcasts Once Upon a Gene and Nonprofit SnapCast and learn what makes Chiari Support a wonderful community all these years. 

We are also about to conclude our World Rare Disease Day fundraiser and we’re sharing with you some of the details here.

1. Once Upon a Gene podcast Features Ben’s Friends 

This blog highlights what Ben and Effie Parks talked about in the podcast which includes the story behind the founding of Ben’s Friends and what ripple effect the community has on the people that found help on the sites.

2. Nonprofit SnapCast Features Ben Munoz

This blog shares some of the things Ben and Mickey Desai covered in the Nonprofit SnapCast episode which revolves around how the organization is able to do more with less resources.

3. Happy 11th Anniversary, Chiari Support Community!

What makes Chiari Support a great community? Find out in this blog.

4. Ben’s Friends World Rare Disease Day Fundraiser

Just a quick update on our World Rare Disease Day fundraiser. We launched our GoFundMe fundraiser earlier this month and promoted it through an email series sent to Ben’s Friends past donors, friends and family.  

Twenty four individuals have already extended their support either directly through GoFundMe or other methods such as via Paypal or check. We have so far received $19,450 in donations. Thank you for your support.

In this update, you’ll meet our Lead Interns Danielle Havord-Wier and Arjuna Srikrishnaraj, learn about the different ways to help OPMD patients, and find out the benefits patients receive from online support groups.

1. Some of the Things You Can Do to Help Patients with OPMD

This article discusses some of the things other people should know and can do to help their friend or relative living with OPMD

2. Spotlight: Ben’s Friends Lead Interns

Meet Danielle and Arjuna and find out what being a Ben’s Friends Intern means to them.

3. Benefits of Having a Rare Disease and Chronic Illness Support Group

This blog post highlights some of the ways a patient benefits from an online rare disease and chronic illness support group.

4. Patreon Project

Last year, we launched a number of experiments to find the best fundraising design using the Patreon platform. We have created Patreon pages for our Living with PSA, AVM Survivors, and Living with Fibromyalgia communities. Everything we have learned from previous iterations was applied to the Ben’s Friends Patreon page. 

While all of these pages are active and generating donations, it is the Ben’s Friends Patreon page that we are actively promoting. 

At present, we receive a net monthly donation of USD 119.69 from all our Patreon pages.

In this update, find out what Scott shared on What’s Your And?, a podcast that focuses on what the guests love to do outside of their job. And our Living with PsA community is now 10 years old! 

Also, learn about vaccine protocols and COVID-19 in Tom’s informative article, and get updated on recent studies about depression and chronic illnesses.

1. What’s Your And? Podcast features Scott Orn

In the What’s Your And? podcast episode, Scott talked about his volunteer work at Ben’s Friends. He recalled how Ben’s Friends has empowered patients and shares how it feels to be able to change people’s lives. 

2. Happy 10th Anniversary, Living with PsA!! 

In this blog, our moderators shared some trivia as well as some of their unforgettable experiences in the community through the years.

3. Vaccine protocols and COVID

In this article, Tom gives a brief overview of the vaccine trial process, what they look like in the case of COVID, and what we can expect in the near future.

4. Effects of eculizumab use shows promise for patients with myasthenia gravis 

Recent studies show encouraging results of the use of eculizumab in treating myasthenia gravis.

5. Depression and Autoimmune and Chronic Illnesses

This blog presents findings from recent studies regarding the relationship between depression and autoimmune and chronic diseases.