Author Archives: Rose Andrade

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. 

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

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.

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, 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.

In this update, we’re sharing information about ADHD and endometriosis, two of the 40+ conditions in Ben’s Friends communities. Also, find out what I shared in the Two Disabled Dudes podcast episode that was posted online recently.

1. He’s not a bad kid. He’s living with ADHD 

What is it like to live with ADHD and what can people around them do to help? 

2. March is Endometriosis Awareness Month

Learn what endometriosis is and share information to increase the chances of sufferers getting an early diagnosis and receiving appropriate treatment. 

3. Two Disabled Dudes Podcast features Ben Munoz

In this podcast episode, I shared inspiring lessons I learned from having an AVM stroke, coping with the loneliness and fear during recovery, and making the most out of life.

Board Meeting Held:

June 10, 2020, 9am Pacific, 10am Mountain, 11am Central, 12pm Eastern

Community Updates

• Regular blog posts are getting published to BF Blog site for our newsletters
• Regular newsletters are being released to keep friends and supporters updated
• Clasina leads in running mods training through Google Classroom to improve communities
• Student intern program is expanding to build up interactions and activities within our communities
• Pavilion Consulting is being hired to lead the community home page redesign
• Learning how to self-host communities is being explored to help lower costs in hosting our 40+ communities
• BF partners with Backpack Health to expand patient services

Fundraising Updates

The following small projects are being carried out to bring in revenue for Ben’s Friends:

• Partnership with various organizations such as with Science 37 to gain sponsorship,  JC Muyl is leading the way
• NW engineers is building patient registry proof-of-concept
• Running a test Patreon campaign for PSA

Board Meeting Held:

Tue, Nov 12, 2019, 9am Pacific, 10am Mountain, 11am Central, 12pm Eastern

• The GoFundMe page is live. We’ll start to promote it on Thanksgiving.
• Rosemarie and Sascha sent out a donor quarterly newsletter last week and so we have our donor list ready for our emails.
• Rosemarie and Sascha have a series of fundraiser emails ready to go.
• Ben will fly to LA on Nov 23 and to NYC Nov 19-20 to record fundraiser videos with Eric, Jeremy and patients.
• Patrick is leading the way on corporate outreach for the holiday fundraiser.
• Ben added some matching tiers and perks. Open to ideas on this.

Board Meeting Held: Tues, October 9, 2018  9am Pacific, 11am Central, 12pm Eastern

• Team welcomes back Deb Hickinbotham. Deb started off as a moderator of TN, and then GPN, and then joined the board of directors before taking some time off.
• The search for a new Director of Development and Interim Executive Director will commence early of 2019, after our year-end fundraiser.
• Team welcomes two new student interns starting this month: Arjuna, who joins student moderator group and Fareed, who works on generating PR to turbo boost fundraising efforts and moderator morale.

• The Grantwriting Team (Sinead Thornton, Christine Harmel, Angela Ryan, and Rose Andrade) made first formal attempt at applying for grants from corporate social responsibility departments and foundations. Two grants were applied with more coming.
• Sinead Thompson represented Ben’s Friends at the annual Global Genes Conference in Irvine, CA. She focused on networking with organization capable of supporting our work.
• A team is launching a pilot program “Donate your Birthday on Facebook” in which members are encouraged to pledge to donate their birthday to their patient community to raise an amount of $50-$100 from their friends and family.
• It’s almost time for our annual fundraiser. We’ll be following the familiar blueprint of a good fundraiser video, sent to a group of good friends, and ask for their support. Annual fundraiser will be launched before Thanksgiving.

• Usability issues on the current platform (Discourse) had been pointed out  as one of the reasons for lower traffic recently within our communities
• A big member survey “How are we doing?” will be sent among members to ask the community for feedback and suggestions on how we can continue to improve Ben’s Friends communities.
• The Mod support team currently experiments with Workplace at Facebook.