2024 1st Quarter Newsletter

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Our sincerest thank you’s to those who donated to Ben’s Friends in 2023 and enabled us to connect with over 81,000 patients and caregivers worldwide and have them safely build relationships with one another.

JANUARY AWARENESS

Thyroid Awareness 

The thyroid is a small, butterfly-shaped organ found in the middle of the lower neck. It produces hormones which influence all of the cells, tissues and organs in the body. Graves’ is a rare autoimmune disease which typically causes an overactive thyroid and the muscle and fat tissue behind one or both eyes to become inflamed. Signs of thyroid disease may come on fast: Changes in energy levels, unexplained weight change, hand tremors, nervousness. Read and learn from former professional golfer and broadcaster, Karen Stupples.

Thyroid eye disease may bring new challenges but joining  a support group can help. Visit Living with Graves Disease. 

Winter Sports TBI Awareness 

Winter sports such as snowboarding, skiing and snowmobiling are exhilarating but there are extreme physical risks associated with these activities like traumatic brain injuries. Universal tips to help make a winter sports adventure safer: Always wear a helmet, wear protective gear and outerwear to limit skin exposure, discuss the effects of your medications with a doctor, know when to stop if you are tired, and never participate in these sports alone. TBIs are emergencies and require immediate treatment at the ER.

Get support and connect with other patients who experienced similar trauma from Traumatic Brain Injury Support Patient Community. 

FEBRUARY AWARENESS

Time to Talk Day
The UK’s biggest mental health conversation. Any conversation with someone who is struggling with mental health issues matters!

1. Ask questions and listen
2. Don’t try to fix the problem
3. Find a quiet place to talk
4. Express care and support 

American Heart Month
Congenital Heart Defects

     
There are several categories of congenital heart defects ranging from mild to severe, and some people have few or no symptoms. These defects are usually, but not always, diagnosed early in life. Coping with a heart condition may be complex but recovery becomes more manageable when you have the right kind of emotional support. Get support from Congenital Heart Defects Community.

Raynaud’s Awareness
Cold weather can be painful for those with Raynaud’s syndrome. A pain management specialist and a vascular doctor share tips to keep warm without exacerbating triggers of Raynaud’s.
Any other tips you want to share? Please do so in our Living with Raynaud’s Disease community.

National Caregivers Day-February 16th
Caregivers should be appreciated year-round. Their importance and patience is especially honored on National Caregivers day when we pause and recognize the personal care, and physical and emotional support they provide. Caregivers can come together and share their experiences and receive help from others at Ben’s Friends Caregiver Support community.

World Rare Disease Day- February 29th
As an estimated 400 million people worldwide are affected by rare disease, Rare Disease Day has become a global annual event to raise awareness; more than 7000 known diseases have been identified.

Other facts:
1. 50% of patients affected by rare disease are children
2. 95% of rare diseases lack an FDA approved treatment
3. 8 in 10 rare diseases are genetic
4. 4.8 years is the average time it takes for a rare patient to receive an accurate diagnosis

Sources: Rare Genomics Institute
               Global Genes 

CHECK OUT THESE RESOURCES

Do you or anyone you know need financial or in-person help due to cancer, lupus, Eagle Syndrome, or an AVM? Visit WiTT (We’re in This Together). This is a resource accessible in the U.S.

PALS SkyHope arranges free air transportation for medical, military personnel and humanitarian efforts primarily serving the East Coast of the U.S. Do you or a family you know need a free medical flight? Request a flight from PALS SkyHope. 

Ben’s Friends 2023 Highlights

by ⋅ Featured

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 helping more people affected by a rare disease!

by ⋅ Featured

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

January 2023 Communities Performance

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Here are some of the highlights from our communities stats for the month of January 2023.

We have 98 new members from last month. Again, our top three performing communities on memberships are AVM, BAF and Eagle.
AVM – 31
BAF –  26
Eagle – 21

The Google Analytics shows slight increase on all our metrics.

ANALYTICS DATA:
Members >>   80,390
Unique Visitors >>   14,459
Traffic (Google Analytics) >>  24,024
Visits (Discourse Dashboard) >>   5,036
Page Views (Google Analytics) >>   74,600
Page View (Discourse Dashboard) >>  476,870

The Facebook numbers shows decrease on FB followers, a slight increase on FB engagements and moderate leap on FB post reach. The page views record for all FB communities did not generate any data from the past month.

FACEBOOK STATS for November 2022:
Facebook Followers >>    178,119
Total FB Engagement >>   433
Total FB Page Views >> 0
Total FB Post Reach >> 2,939

We’re Making New Friends at Ben’s Friends

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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.

Ben’s Friends 2022 Highlights

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You’re one of the reasons why since its founding 15 years ago, Ben’s Friends has grown into a network of 48 online support communities that help thousands of patients daily.

You’ve also inspired us to do more beyond providing emotional support through our online communities.

Check out some of this year’s highlights at Ben’s Friends.

Ben’s Connections is almost done. Soon, this platform will enable our members to find the best disease specialists in their part of the world and beyond, find out about clinical trials which may be of interest to them, and participate in medical and pharmaceutical studies of their choosing.
Our first ever Development Officer!
This year, we hired 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.
Ben’s Friends and WiTT
Our partnership with WiTT empowers members impacted by lupus or Eagle Syndrome by making it easy to ASK for and receive help by signing up at wittforever.com or calling 1-800-550-1678. 
Our lead intern, Arjuna, started medical school this year!
“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.”
“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.”
Narcolepsy Is Beyond Sleepiness. How Does it Affect a Patient’s Life?
Narcolepsy is not just a sleep disorder, but a pervasive neurological disorder. Ben’s Friends joined organizations around the world in raising awareness about this condition during the World Narcolepsy Day this year. We shared some info to our members about this disorder in this blog.
4 Things to know to help a friend living with Addison’s Disease
We shared some tips that friends and families of people living with Addison’s Disease can use to help their loved one.
7 Things to Look for When Choosing a Doctor
We always encourage our members to advocate for their own health. One of the ways to do this is by carefully choosing their care team. We shared some tips on how to choose a doctor here.

September 2022 Updates

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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

August Updates

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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

July Updates

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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.

April Updates

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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.