Author Archives: Ben Munoz

Volunteers, Supporters, and Friends,

I hope your year is off to a great start. Ben’s Friends’ year is certainly off to a great start. Here’s a quick summary of some of the things going on. I’m happy to elaborate on anything, but I wanted to get at least a brief update to everyone here before the end of the month.

1. Successful Year-End Fundraiser!

Ben’s Friends has been running year-end fundraisers since 2007, but this was our most well-run, best-organized, professional online fundraiser so far. Rich did a phenomenal job leading the way. During the process, we created a number of templates and lessons that we’ll reuse again and again in future fundraisers. Great job to Rich and the entire team !! (We’ve already reserved his services for our 2025 fundraiser.)

2. Welcome New Board Members

Last year, we had a number of board members retiring (to the board emeritus) after nearly a decade of dedicated service. We are currently filling those available slots with some wonderful human beings, and then expanding. Please welcome to Matt and JC as our newest board members. We’re still interviewing and looking to add 1-3 additional members.

3. Patient Advocacy Internship

Our patient advocacy internship continues to expand and evolve. These are typically undergraduate students passionate about patient advocacy and/or looking for volunteer opportunity ahead of grad school. Huge kudos to Jamie and Richard for your efforts here.

4. Rare Disease Day – Feb 28 2025

Every day, on the last day of February, NORD promotes rare disease awareness. We’re currently discussing on we’ll be involved this year. TBD.

5. Strategic Planning

The start of the year is always a good time to reflect on our mission and how we can best support. Our mission is to connects patients living with a rare disease to a supportive, understanding, and life-changing community.

Currently, Jamie, Richard, Mark, Sharon, and Merl are taking a deep dive, looking at the rare disease ecosystem, looking at our own strengths and weaknesses, to make sure we are doing the right thing by rare disease patients, volunteers, and donors.

If you would like to get involved in these discussions, let me know here or via DM.

On behalf of the thousands of patients you help every month, thank you so much.

Thank you for your time and support! 

Much love to each of you from Austin TX!

As we approach the end of the year, we just wanted to take a moment to express our gratitude for your involvement with Ben’s Friends.

You’ve played a crucial role in the incredible journey of Ben’s Friends, helping it evolve into a network of 48+ online support communities that make a difference in the lives of thousands of patients every day. 

We invite you to check out some of the highlights from this year at Ben’s Friends and see the positive outcomes your contribution has helped us achieve.

1. Ben’s Friends’ Partnership with WITT

Through our collaboration with “We’re in this Together,” members from Ben’s Friends AVM Survivors Community, Living with Eagle Syndrome, and Life with Lupus Communities were granted access to register on WittForever.com.

This opportunity empowers patients to establish personalized registries, enabling them to seamlessly receive both financial and non-financial support from friends and family, all without the need for direct requests.

2. Our Participation in this year’s NORD Rare Disease Day Events

Thanks to our amazing advisers and executive team members, Tom James, Richard, and Matt, participants in 4 NORD Rare Disease Day events learned about the amazing work we do at Ben’s Friends.

3.  Launch of Ben’s Connections on Living with PSA Community

After our dedicated efforts, Ben’s Connections has finally been launched. Members of our Living with Psoriatic Arthritis Community are the first among our members to benefit from the amazing features of Ben’s Connections, such as tapping into the most recent research and treatment options for their condition. Stay tuned as we plan to roll out this initiative to other communities.

4. Launch of Warrior Moms Living with Rare Disease Community!

In a significant development this year, we successfully launched the Warrior Moms Living with Rare Disease Community at Ben’s Friends. This community serves as a dedicated and secure space for mothers and fathers raising children with rare and chronic illnesses. 

5. Thank you for participating in our #GivingTuesday campaign!!

In collaboration with Rare Revolution Magazine, we joyfully observed Giving Tuesday, an occasion that enabled us to amplify awareness about Ben’s Friends.

This partnership created an opportunity for a broader community to join us and educate patients and their families about the integral service Ben’s Friends provides.

A heartfelt thank you to everyone who actively participated in the Giving Tuesday Campaign – your support is instrumental in fostering positive change within our communities.

We’re excited to announce that Ben’s Friends will soon launch a community for moms who have kids living with a rare disease, inspired by the warrior mothers some of our organization’s members met during Rare Disease Day. Thank you to the development team and Matt H., one of our advisors, who funded the new community. We have also been added as a resource by two institutions based in the U.S.

1. Ben’s Friends was added as a resource!

The National Organization for Rare Disorders (NORD) and KGA, a top-tier Employee Assistance Provider, have added Ben’s Friends into their system as a resource. We look forward to helping more people affected by a rare or chronic illness.

2. Coming soon: Warrior Moms Living with Rare Disease

Being a mom of a child who is touched by a rare disease is quite a challenge! But soon enough, these warrior moms will have a safe and supportive community of their own under Ben’s Friends.  

3. What You Need to Know About Sjögren’s Syndrome

April is Sjögren’s Syndrome Awareness Month. We shared some information to our members about this often mis- or undiagnosed disease.

4. Sarcoidosis Awareness: Shedding Light on a Rare but Significant Disease

Sarcoidosis can affect almost any part of the body. While some patients with Sarcoidosis can be completely asymptomatic, others may experience severe symptoms which can cause permanent organ damage if not detected early. We sent this blog to our members to promote awareness about Sarcoidosis

Rare Disease Day is February 28. The day is designed to raise awareness of these diseases which affect more than 300 million people worldwide. Hundreds of events have been organized around the globe from the end of February through mid-March and Ben’s Friends is participating in a number of US events for the first time.

Ben’s Friends’ brochures will be distributed at:

• Nationwide Children’s Hospital – Columbus, OH
• Washington University School of Medicine – St. Louis, MO
• Case Western University- NORD (National Organization for Rare Disorders) event, Ohio
• Arkansas College – NORD event, Arkansas
• Samuel & Josephine Plumeri Wishing Place-NORD event New Jersey

A huge thank you in advance to our advisers and members of the executive team who are presenting at the following virtual events:

• NORD Rare Network PA – Richard
• NORD Rare Network IA – Richard
• NORD Rare Network NY – Matt
• NORD Rare Network KY-Tom
• A slide introducing Ben’s Friends will be shown at: University of Buffalo/Jacobs School of Medicine and Biomedical Sciences

February is also designated as American Heart Month. Ben’s Friends’ list of communities includes atrial septal defect and congenital heart defects. Check out this blog that we shared to our members about congenital heart defects.

In this update, we’re sharing tips on how to help friends living with addison’s disease, myasthenia gravis, and interstitial cystitis. We’re also sharing some information about rare sleep disorders, narcolepsy, and invisible illnesses.

Also, two of our members shared how joining Ben’s Friends helped them and our lead intern, Arjuna, is off to medical school! Thank you for your support!
 

1. 4 Things to know to help a friend living with Addison’s Disease 

Living with Addison’s Disease can have a huge impact on a person’s life. Having friends who care can definitely help. Check out what we shared on this blog. 
 

2. Some of the Rare Sleep Disorders 

In this blog, we shared some of the rare sleep disorders and invited those dealing with a sleep problem to join our Living with Sleep Disorders community. 

3. 4 Things You Can Do to Help a Friend with Myasthenia Gravis 

Check out the tips we shared on how to help friends and loved ones living with myasthenia gravis. 

4. Narcolepsy Is Beyond Sleepiness. How Does it Affect a Patient’s Life?

In this blog, we hope to spread awareness about the nature of this neurologic disorder and its impact on the patient’s life. 

5. What is Interstitial Cystitis and What Can You Do to Help? 

The symptoms of interstitial cystitis are not the only challenges patients have to deal with. They are also confronted by the lack of people’s awareness about this condition. Check out these tips on how to help patients. 

6. What You Need to Know About Invisible Illnesses

Many chronic illnesses are invisible and people are not aware of the struggles patients deal with. We want to help spread awareness about invisible illnesses through this blog.

7. Congrats to our intern Arjuna who is off to medical school!

“I have been working at Ben’s Friends for 4 years now. I started in 2018 after a good friend of mine who used to volunteer here told me about the wonderful support communities here. Being part of the Ben’s Friends family is one of the things I am most grateful for.”

8. Why we do, what we do. Recent notes from supporters…

“I think the work Ben’s Friends is doing impacts people and communities in significant ways. I love that it’s accessible to many and connects in ways no other community does. Keep up the great work, would love to see more growth and perhaps a mobile app in the future.” – L.L.

“I was re-coming to terms with a ruptured AVM as a child.  I joined up to AVM Survivors, and the discussion thread really helped.  I’m based in New Zealand, and at the time there was little knowledge or support here.  The forum helped me to better understand my journey and not feel so alone.” – Kay

In this update, we’re sharing some information about rare sleep disorders as well as our blog about how to help someone with myasthenia gravis. Also, one of our members shared how joining Ben’s Friends helped her. Thank you for your support!

1. Some of the Rare Sleep Disorders 

In this blog, we shared some of the rare sleep disorders and invited those dealing with a sleep problem to join our Living with Sleep Disorders community.

2. 4 Things You Can Do to Help a Friend with Myasthenia Gravis 

Check out the tips we shared to our members on how to help friends and loved ones living with myasthenia gravis. 

3. Thanks to Your Support, Kay Is Now at Ease

“I was re-coming to terms with a ruptured AVM as a child.  I joined up to AVM Survivors, and the discussion thread really helped.  I’m based in New Zealand, and at the time there was little knowledge or support here.  The forum helped me to better understand my journey and not feel so alone.” – Kay

In this update, we’d like to share with you some updates about our fundraising efforts. We’re also sharing the blog we posted in celebration of the Graves’ Disease Awareness month as well as the tips we shared to members on how to help friends living with Addison’s Disease. Plus, a note from one of our supporters!

1. July is Graves’ Disease Awareness Month 

In this blog, we hope to raise awareness about Graves’ disease so that more people could be diagnosed earlier and receive appropriate treatment.

2. 4 Things to know to help a friend living with Addison’s Disease 

Living with Addison’s Disease can have a huge impact on a person’s life. Having friends who care can definitely help. Check out what we shared on this blog. 

3. Ben’s Friends fundraising

With the help of Jacalyn, our new development officer, we’ve started to beef up our fundraising efforts. These include maximizing our social media accounts and our main Web site, BensFriends.org, to raise funds all year round instead of only during the holiday season as we previously do. We have also encouraged our supporters to subscribe to our newsletter and be informed about rare diseases and chronic conditions as well as opportunities to get involved. This past month, we also raised awareness of matching company funds available at many US companies to their employees who donate to nonprofit organizations. 

4. Why we do, what we do. A recent note from a supporter…

“I think the work Ben’s Friends is doing impacts people and communities in significant ways. I love that it’s accessible to many and connects in ways no other community does. Keep up the great work, would love to see more growth and perhaps a mobile app in the future.” -L.L.

 In this update we’re sharing some information about the rare autoimmune diseases in our list of communities as well as our blog about connecting with Ben’s Friends.

1. Some of the Autoimmune Rare Diseases in Ben’s Friends List of Communities 

In this blog, we shared with our members some information about the rare autoimmune diseases that we have an online community for.

2. Connect with Ben’s Friends!!

Previously, our newsletters were sent exclusively to our board members, volunteers, and donors. Now, anyone interested in learning more about Ben’s Friends as well as rare and chronic illnesses can subscribe to our newsletters. Check it out here. 

3. Patreon Update

We have raised a total of USD 2928.81 through Patreon donations as of June 1 and so far have 32 active patrons. Please share this membership platform with others whenever possible: https://www.patreon.com/bensfriends

4. Matching Donations

Did you know?

Many companies support causes that are important to their employees and some retired employees by matching their charitable contribution made within the past year. You can increase the impact to our patient communities by matching your gift. Contact your CSR or human resources personnel to find out more information.

In this update, we’d like to introduce to you one of our new volunteer moderators and give some updates about our Patreon project. We’re also sharing the article that we posted to promote awareness about erythromelalgia.

1. Now Hiring a Development Officer

Ben’s Friends just started a nationwide search for a professional fundraiser (aka Development Officer). This professional fundraiser would mostly focus on building long-term partnerships with family foundations and corporations. 

Can you help by posting this link on your social media? Thank you!

https://www.linkedin.com/jobs/view/2990443328/

2. Spotlight on our moderator: Norm of the Living with PsA Community 

It’s no secret that our moderators play a crucial role in making our communities the safest and most supportive there is online. That’s because our moderators are members themselves who value our community so much. Check out this blog to meet Norm, one of our newest moderators. 

3. What People Living with Erythromelalgia Experience 

Since it is a rare disease, very few people are familiar with erythromelalgia. But as more people learn about it, there could be more people supporting advocacies that would benefit patients and their families. We’re hoping to raise more awareness about erythromelalgia through this blog. 

4. Patreon Update

As of March 1, we have raised a total of USD 2538.85 through Patreon donations. We have also started sending out a regular newsletter to our Patreon donors as well as testing new marketing strategies to gain more patrons.

In this update, we’d like to introduce to you our new board of directors member. We’d also like to share how the MakeMeSmile extension makes donating to Ben’s Friends easier. And in February, we celebrated World Rare Disease Day by encouraging members to raise awareness about rare diseases.

1. MakeMeSmile makes donating to Ben’s Friends through AmazonSmile much easier

To donate to Ben’s Friends through AmazonSmile, shoppers always need to ensure that they are shopping at Smile.Amazon.com (instead of the homepage). With the MakeMeSmile extension, the Chrome browser will automatically redirect shoppers to Smile.Amazon.com whenever they visit Amazon.com.

2. Help spread awareness about rare diseases

Through this blog, we encouraged our readers to join us in raising awareness about rare diseases in celebration of World Rare Disease Day.  

3. Please welcome our new board of directors member

We’re happy to announce that Tiffany Scaparotti, Assistant Dean of Development at Northwestern University – Feinberg School of Medicine, is joining our board of directors. She has been serving on the board of advisors for several years and we’re lucky to have her.