In this newsletter, we’re sharing some updates about our Patreon project as well as the blogs about nephrotic syndrome and ADHD that we have sent to our members. 

1. Please help promote our job opening

We’re looking for a Development Officer (remote) whose primary responsibility would be to seek the financial support Ben’s Friends requires to fulfill our mission of helping people affected by a rare disease.

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

https://www.linkedin.com/jobs/view/3050501221/

2. The Challenges of Living with Nephrotic Syndrome 

There is no doubt that the symptoms of this condition are already a lot to deal with. And yet there are still other challenges that come with living with nephrotic syndrome. We shared this blog to our members to raise awareness about this condition.

3. People living with ADHD can have a bright future 

ADHD is often considered as a cause of learning disability in kids and those who struggle with the symptoms are often judged negatively. Many of them are told that they don’t have a shot at achieving much in life. 

We shared this blog to our members to let more people know that not only can people with ADHD succeed despite the symptoms, they can even use them as an advantage. 

4. Patreon Update

We have raised a total of USD 2673.11 through Patreon donations as of April 1 and so far have 34 active patrons. 

In this update, we would like to introduce the newest member of the Ben’s Friends team. We’re also sharing some information about how fibromyalgia affects a person’s work as well as some of the things that patients with Crohn’s disease might be experiencing and how friends and family can possibly help. 

1. Our first ever Development Officer!

We’re excited to introduce to you our very first Development Officer, Jacalyn Rose. Before specializing in non-profit marketing and development, she built up a strong background in advertising, account management and sales. Jacalyn lives on Long Island in NY.

2. What is fibromyalgia and how does it affect a person’s work? 

Fibromyalgia can affect anyone regardless of age, but it is more commonly detected among individuals between 30 and 40 years old. Check out this blog that we shared with our members about how fibromyalgia affects a person’s work. 

3. Some Things to Understand about Crohn’s Disease

In this blog, we shared with our members some ways how they can help people living with Crohn’s disease. 

4. Patreon Update

We have raised a total of USD 2802.24 through Patreon donations as of May 1 and so far have 32 active patrons.

5. LinkedIn Project

We are embarking on a serious LinkedIn project and everyone’s participation will help a lot. We’ll be sending more updates soon!

 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.

We’re happy to share with you some updates about our fundraising efforts as well as about the new services for our members.

1. 2021 Board Fundraiser

Thank you very much for making our 2021 Board Fundraiser a success! We have raised a total of $70,470 USD including donations sent through GoFundMe, Paypal, and cheques.

2. Ben’s Friends to Launch Ben’s Connections Soon 

Our members will soon be able to find information about clinical trials which may be of interest to them through our patient directed registry Ben’s Connections. 

3. Ben’s Friends Self-Advocacy Project for Members 

Soon, our members will benefit from educational materials that could help them advocate for their own health. 

4. Patreon marketing

As of January 1, we have already raised 2,268.14 USD from contributions via Patreon. Last year, we worked on a system for gathering testimonials from members. These will be included in the monthly newsletter we will be sending out to our supporters via patreon. We will soon start working on new marketing experiments to reach more potential donors through Patreon.

2021 is almost over. This may still not be our ideal year, but we sure have a lot of things to be grateful for. That includes having you as part of our Ben’s Friends family. Thank you!

We’d like to take this opportunity to wish you a happy holiday season and a wonderful year ahead.

And before the year comes to a close, let’s take a look at some of the highlights of 2021 at Ben’s Friends.

	How Ben’s Friends moderators work as a teamNot only is Ben’s Friends very lucky to have wonderful moderators, the way they work as a team is beyond amazing.
Ben’s Friends Lead InternsOur co-ED, Clasina, had a wonderful chat with our lead interns Arjuna and Danielle where they shared about how they started at Ben’s Friends and the wonderful things they learned so far.
	Happy 10th, Living with ADEM Community!Our Living with ADEM Community turned 10 this year! We shared some tips to patients and caregivers on how to better cope with the effects of ADEM.
Podcasts featuring Ben’s FriendsBen’s Friends was featured in three podcasts this year, including Nonprofit SnapCast, Two Disabled Dudes Podcast, and Once Upon a Gene podcast.
	How to Prepare for a Doctor’s AppointmentGetting the most out of a doctor’s consultation for a rare disease can be really challenging. We shared some tips to our members so that they can maximize their appointment.
Preparing for a surgeryMany of our members will have to undergo a surgical procedure, so we compiled some of the tips they might find useful.
	What is systemic lupus erythematosus (SLE)Being an invisible illness, the difficulty of dealing with lupus cannot be easily seen. So we compiled some tips that friends and families of people living with lupus can use to help their loved one.
Helping someone suffering from narcolepsyDealing with the symptoms of narcolepsy is already challenging. People judging them as being rude, lazy, or irresponsible definitely make things a lot worse. We wrote a blog to help raise awareness about this condition.
	Why join an online support group? We shared with potential members some of the benefits of joining a rare disease and chronic illness online support group like Ben’s Friends.
Getting the most out of Ben’s Friends communitiesWe’re happy that many people are benefiting from our sites simply by browsing posts. But since interacting with other members can make a huge difference, we shared some tips on how patients and caregivers can really benefit from the Ben’s Friends communities.
	Ben’s Friends launches its Caregiver Support CommunityCaring and advocating for loved ones who are affected by rare diseases have its own unique challenges. Our Caregiver Support Community will allow members to get in touch with other people who know too well the challenges of caring for someone who is affected by a rare disease.
A mother and daughter’s AVM journeyIn this blog, we share the story of Lisa and Kashmir, hoping to inspire others with their amazing story.

In this update, you’ll learn about our new Caregiver Support Community. And check out what we’ve shared about Juvenile Psoriatic Arthritis to help raise awareness about the challenges that kids and teens can suffer from due to psoriatic arthritis. 

1. 2021 Board Fundraiser

In our previous fundraiser, we aimed to raise $25,000 for Ben’s Friends communities. Because of your support, we have surpassed our goal and raised $30,600. Thank you!

Let us change more lives this year. Spread the word about our GoFundMe fundraiser so that we can hit our goal of raising $30,000 to help rare patients and their family. Please share this link to your friends and contacts.

2. Ben’s Friends launches its Caregiver Support Community

Caregivers who provide care for a loved one affected by a rare disease now have their own Ben’s Friends community. This will help them navigate through the unique challenges of caring and advocating for a loved one with a rare disease.

3. Even kids and teens can get Psoriatic Arthritis

Many people are not aware that kids and teens can also suffer from arthritis. We’d like to change that. That’s why we’re sharing this information to our members. 

4. Members supporting us via Patreon

As of November 1, we have already raised 1914.95 USD from contributions via Patreon. We have also received our first batch of video testimonials from members and will start sending a monthly newsletter to our patrons this January.

Join us in celebrating the 10 Anniversary of the Living with ADEM community as well as in spreading awareness about Mast Cell Diseases. This month, we also published a blog with links to the doctor and hospital recommendations in each of the communities.

1. Happy 10th Anniversary, Living with ADEM Community!!

Founded on October 13, 2011, our Living with ADEM Community has now been helping patients and their families for ten years!!

2. October 20 is International Mastocytosis & Mast Cell Diseases Awareness Day

This month we’re helping raise awareness about Mast Cell Diseases so that people affected by a mast cell disease can have greater chances of getting an early diagnosis and receiving appropriate treatment

3. You might find a specialist for your rare disease in our Recommend a Doctor pages

Many patients benefit from the doctor and clinic information they find in our communities. We thought of compiling them in a blog so that even more people could get proper care and treatment.

4. Leadership team’s ongoing projects

Below are the projects our leadership team is currently working on:
Revising our users agreement and privacy statement.
Updating our members about what sets us apart from social media and why Ben’s Friends gives utmost importance to their privacy.
Expanding our caregivers site and inviting family members and friends to participate from each community.
Following a successful beta test of our patient directed registry, Ben’s Friends Patient Registry, is being prepared to be rolled out to our first communities.

Communities

• Number: 43 (no change)
• Activity:  down over the summer, starting to build again (normal seasonal pattern)

Chan-Zuckerberg Initiative Grant

We were disappointed not to be selected to receive a grant.  Our request to be included in the networking events, however, has been accepted and we have had one contact already.  Tom is the lead for this.

Site enhancements and improvements

• SEO Improvement

Work continues to improve our SEO by improving exposure on social media, and by creating landing pages on all of our communities which are dynamic, reflective of the community,  and which have keyword-rich content.

• New Landing Pages

Landing pages with customized content are being installed one by one on the communities.  Have a look at one of the latest:   https://lymediseasesupportnetwork.org/

New major initiatives

• Registry  

The beta version of the patient registry has been tested by a number of patient members and feedback noted and responded to. We have started a number of implementation projects:

• As a number of our communities are actually several diseases and there are with many of the diseases with co-morbidity, Tom is working with the Missoula college Coding Classes to list the appropriate IDC-10 codes to enhance the search and database
• Our patient volunteer, Mark, who manages our Email lists, is building a list-serve email address for each community that can be the forwarding point for industry/academic interest in studies and trials so anonymity will always be maintained by us
• We have started developing monetization strategies with our development partner at My Rare Data.

Patient Advocacy

Work continues on our self-advocacy project. We are considering using the very user-friendly open source software, Moodle, to develop the instructional units for site usage, Self-Advocacy, Patient Registry and other Training modules.

Ongoing and Future Projects/initiatives 

• Recruitment and training of Moderators —  with the help of our Lead Moderator, Richard
• Possible re-location of Learning Units (Interns, Moderators, Patient Advocacy) to a location shared by another organization using the software “Moodle”.

Staff Team (receiving honoraria)

• ModSupport (Sharon, Merl) — check all sites daily, and provide advice, support and administrative support as needed
• Lead Moderator (Richard) — recruitment, coaching, host remote social events, encouraging online presence and communication.
• ED (TJ and Clasina)