When Conferences Go Wrong: Have a Plan

Some conferences go smoothly. Others end in the wake of an active shooter event. There is a lot of grey between those two extremes, and organizations sending personnel to conferences ought to have a communications plan in place for the unexpected.

Last month, my colleague Eileen Coyne and I were attending RISKWorld in Atlanta (April 30 to May 3). On the final day of the conference, ahead of the closing keynote, an active shooter event took place a few miles from the conference location.

Our first notification of trouble came in the form of an ABC News alert. Text alerts from our hotel and the convention followed. Digital signage at the conference turned green with white text, alerting everyone to shelter in place and that the conference center was not part of the active shooter scene.

We immediately reached out to our families as well as colleagues to advise them that we were fine, that the conference was shutting down and the event in question was not nearby. As it turned out, the shooting took place two blocks from our hotel. It would be hours before the hotel would come out of lockdown and allow guests to come and go.

In speaking with other attendees, it became clear that if their companies had formal crisis communications plans at all (and about half of most US organizations do not), they did not have protocols for staff attending off-site events during an emergency.

Given the current social climate, all organizations need to develop crisis protocols for off-site events. Contacting the staff attending the event, confirming they are safe and cascading that message across the organization – and potentially to the family of those staffers involved — should be part of any crisis communications strategy. This applies whether it’s your CEO speaking at the conference as well as employee attendees or sales team members staffing the company’s vendor booth.

Whether the crisis originates from the actions of a person or persons, Mother Nature or something else, having a plan for out-of-town staffers in case of emergency is key. And, importantly, those traveling should be trained in the details of the plan — including phone contacts and protocols if cell or other communication services are disrupted.

According to the FBI, active shooter deaths and injuries are at a 5-year high this year. Companies with traveling personnel who spend any significant time on the road should receive active shooter training. This includes the basic principles of run, hide and fight, as well as what to do when and if authorities arrive on scene if you are present during an active shooter event.

This may all appear extreme. And it may be, until your organization is receiving urgent calls from worried families, coworkers or clients in the middle of a crisis event. Being able to respond quickly, with a protocol to follow and facts in hand can help keep your team safe during a chaotic and worrying situation and allow you to communicate factually with all parties concerned.

Advertisement

Stepping Up for Charity

Throughout the year, Kimball Hughes Public Relations participates in a number of philanthropic endeavors alongside our partners and clients in an effort to give back to local communities and those in need. We enjoy supporting all the good our clients do in whatever ways we can, but when we can also get them comprehensive, quality news coverage on their charitable endeavors – that is a sincere thrill.

We did just that earlier this month when Pennsylvania Lumbermens Mutual Insurance Company (PLM) held a head-shaving event fundraiser during their National Meeting benefiting the St. Baldrick’s Foundation, a nonprofit organization supporting childhood cancer research. We secured the attendance of three Philadelphia network-affiliate television news crews to show their audience 17 members of PLM’s team, including CEO John Smith and Assistant Vice President of Marketing Lindsey DiGangi, shaving their heads after raising more than $150,000 for the important cause. Agency Vice President Eileen Coyne and PR Manager Hari Rajagopalan were in attendance at the event, enjoying live string band music from the famous Philadelphia Mummers. Kimball Hughes PR was honored to make a monetary contribution to PLM’s fundraiser as well. Well done, PLM. We’re proud to work with you. To learn more about the St Baldrick’s Foundation and their mission, please visit https://www.stbaldricks.org/

Our team at Kimball Hughes PR is also getting our collective steps in for charity by participating in the fourth annual Insurance Industry Charitable Foundation (IICF) Step Up Challenge. From April 24 to May 21, 2023, the team at Kimball Hughes PR, alongside thousands of insurance professionals, their friends and families will participate in a four-week exercise competition to raise funds for children and communities in need across the US and UK. This will be our team’s third year participating and we’re looking forward to some friendly competition benefiting local nonprofits. Last year, agency President Rod Hughes took home the gold among our team with a whopping 331,329 steps. This year, it’s anyone’s game.

Both teams and individuals are welcome to participate in the challenge. A total of four IICF winners, the top two from the team and individual categories, will be able to allocate a grant to a nonprofit of their choice. To learn more about and sign up for the fourth annual IICF International Step Up Challenge, visit their website, https://stepup.iicf.org/

And the Award Goes to: A Kimball Hughes PR Play on the Oscars for Top PR Fails

The Academy Awards took place just a few short weeks ago, honoring the biggest movies and artists in cinema. What better time to hand out a few of our own “awards” to the biggest stories in PR of 2023 so far. 

Without further ado, the “awards” go to:

The Hotseat Award: Adidas Yeezy Overstock

In October 2022, Adidas was in the hotseat for taking too long to cut ties with their spokesperson Ye (formally Kanye West) when he made public antisemitic comments on social media. Today, Adidas is left with over a billion dollars in Yeezy merchandise, the brand on which they collaborated with Ye that generated around 10% of Adidas’ annual revenue. In 2023, the company expects to take a significant loss as a result of pulling the merchandise.

Aside from the financial aspects of the ordeal, Adidas is still facing issues as many social media users, activists and more wait to hear what Adidas plans to do with the $1.3 billion of Yeezy overstock. From a crisis communications standpoint, Adidas continues to have a problem. Because their original response received considerable backlash, the brand must tread lightly as they balance their public reputation and their bottom line. Disposing of the merchandise could come off as wasteful, selling the merchandise would still financially benefit Ye due to contractual obligation and donating the merchandise could result in it surfacing in the resale market.

As Adidas executives mull over their options and offers roll in to take the Yeezy merchandise off their hands, the company’s future moves will impact its overall business and investors, collectors, activists and social media users. Communications pros are certainly curious to see what happens next.

There are a few things to learn from Adidas’s missteps. First, act quickly. A crisis communications plan is key to ensure businesses can confidently respond and are prepared with talking points, media training and more. Silence can sometimes be as bad – or worse – than saying the wrong thing and the ongoing speculation regarding what Adidas should do with the overstock merely keeps the crisis top of mind for many. Regardless of their final decision, the brand would do well to remain transparent through the process. When a decision is made, they should be prepared for people to ask tough questions.

The It’s About Time Award: The Academy Finally Gets a Crisis Communications Team

In an exclusive Time interview at the end of February, Bill Kramer, CEO of the Academy of Motion Picture Arts and Sciences, revealed the organization hired a crisis communications team for the first time in its history. The development came after the infamous events of last year’s Oscar Awards Ceremony. As most will easily recall, actor Will Smith slapped comedian and MC Chris Rock on stage. If that wasn’t enough, a separate controversy erupted simultaneously around a campaign that led to Andrea Riseborough winning the Best Actress Academy Award for her role in a small indie film To Leslie. Some argued the promotional campaign to bring the little-known-at-the-time movie to the forefront violated Academy rules related to lobbying members for nominations. The organization had no crisis communications team on hand at the time and the headlines began to mount.

The events demonstrate that even an organization with 70 years of experience broadcasting an award show may not be prepared for everything. Today, a crisis communications plan and designated team is critical for almost any business or organization given how quickly narratives can take on lives of their own and social media can skew perception and sometimes results. Kramer recognizes in his interview with Time that while they cannot prepare for every scenario, having a crisis team and modifiable frameworks in place better positions the Academy to handle whatever comes next.

The Biggest Let Down Award: Google’s Bard Announcement

Modern technology is moving at record pace, especially since OpenAI’s artificial intelligence breakthrough in November 2022 with their large language model product ChatGPT. During the past few months, some of the largest technology companies in the world have quickly developed their own AI tools to compete in the race, including Google. However, in the first demo of their product Google posted to Twitter, viewers were quick to notice and call out the obvious flaws in the tool. Shortly thereafter, Google’s parent company’s shares dropped 7.7%, costing an estimated $100 billion and drawing national media attention in the likes of TIME Magazine, CNN and NPR.  

While it may be tempting for brands to rush to tout their own products when a competitor breaks the internet, it’s important to recognize what is at stake. Consumers are keen for near perfect technology and there are enough players in the AI race for investors to explore other options. A proper launch takes meticulous planning and preparation, which requires time well spent.

Before a launch, a good PR team can help give business leaders a perspective of how their product, service or announcement may be perceived by media and the public. For example, in Google’s case, a more carefully crafted launch plan might address limitations of AI chatbot technology such as potential product accuracy issues. When things do go wrong, a PR team can help limit any additional damage by assisting with media requests, crafting statements to address the issue and help brands effectively connect with their audience, even when the audience may be losing trust.

And that’s a wrap on this round of awards highlighting some of the biggest stories in public relations so far this year.

Get to know Mattison Brooks, Public Relations Manager

Public relations is all about relationships—the people behind the stories. That’s why we’re offering this blog series all about our team members. This isn’t about our professional accomplishments but who we are as people. We hope you have as much fun reading along as we do interviewing each other.

1. What got you interested in public relations?

My love of public relations spun off from a combination of my early journalism career, a deep love for American history, and my love of good storytelling. After a short but intense stint covering politics on Capitol Hill at CNN and working local news in a few regional Virginia markets and my hometown in Western Canada, I realized I wanted to do communications differently than I had previously. I learned that I was really excited by taking on the challenges of shaping messaging, crafting narratives, and helping organizations navigate the media world, crisis communications, and engaging the public in mission-focused communications. Working in the non-profit world was an easy jump after graduate school. And that road ultimately led me to here – a new and exciting way to keep telling great stories and engaging clients in new and innovative ways.

2. Tell us about your favorite movie and what appeals most to you about it?

Anyone that knows me knows that this is a multi-hour discussion. However, because I’ve got a word limit, I’ll grudgingly choose one; and that is The Lord of the Rings: The Fellowship of The Ring. This movie never fails to give me chills to this day – and as a young kid, this movie blew my mind. The movie score, the cinematography, the acting, the scale and scope of what was built and created gave life to Tolkien’s masterpiece. I truly believe there’s never been a movie like it… and short of the new Dune movies, there may never be again.

3. What was the last, best book you read and what about it spoke to you?

The last book I read was a guilty pleasure: World War Z by Max Brooks. Totally just an entertaining and thrilling book, written in the form of a pseudo-documentary about a global war against zombies. The movie wasn’t great, but the book is fantastic. The last book that I read that inspired me and spoke to me was probably Washington: A Life by Ron Chernow. The life of George Washington is truly something that people need to read to believe. There’s something very inspiring about a person whose singular commitment to honor and duty shaped the way that we view civic virtue and our system of government to this day. Not without his flaws, the book also does a wonderful job exploring how deeply complicated and conflicted Washington was with his own family, his career, and his view of the revolution he helped fight. How that book and the story of George Washington hasn’t been given a proper treatment or at least translated into an HBO mini-series a-la John Adams or Chernobyl, is beyond me.

4. Tell us about a meaningful hobby or outside of work commitment that is important to you.

I am really into winter sports, which makes living in Florida an interesting place for someone who grew up playing ice hockey and snowboarding. But any time I can manage to get to the mountains I feel completely refreshed. There’s nothing quite like the total peace and quiet at the top of a mountain. It is a great place to clear your head and decompress.

5. Share a fun fact about you.

I am an avid cook and am constantly trying out new recipes for my wife and me. Not all of them are winners, but we’ve stumbled across some absolutely great ones that have become staples in our house. To quote the great classic, Ratatouille: “You must try things that may not work. Anyone can cook; but only the fearless can be great.”

Is it mine? How to share your PR win

You’re famous! Well, somewhat famous. You were included in a great article in a highly regarded, well-read industry publication, and your thought leadership or interview made the front page. The next steps usually involve raising awareness of the story and sharing it among your colleagues, clients and peers. But can you do more? What if your quote would fit perfectly in an upcoming presentation or marketing material? They’re your words, aren’t they?

The short answer is – it’s complicated.

While they may be your thoughts on the page, an article is usually owned by the publication that published the article. This applies to thought leadership as well. Even if you are the bylined author, most publications own the rights to the submitted content they publish. So, what are the dos and don’ts of sharing content?

The Dos

First, most publications encourage authors and sources to share content they contribute through social media, as long as the post links back to either the original story or the publisher’s social media post about the content. Tagging the article and the publication are considered good practice and drawing attention to a story is a great way to deepen relationships with the media.

When it comes to your website, include a link to the article in your press page. This usually involves posting the title of the piece, the author, and the date it was published along with a hyperlink to the original piece. Generally, as long as you are linking to the content on the publication’s website and not copying content, you are not violating any rules related to intellectual property or copyright.

For marketing purposes, it is also acceptable to include mention of the article and is preferable to the publishers if your mention provides details on where to find the original article. For example, if a brochure discusses how a subject matter expert discussed a topic in a recent Forbes article, that is fair game and preferable to all parties if that mention includes the date that article was published.

The Don’ts

The general rule is once content is submitted to a publication, they own it – even if they are your own words. While linking to the original article is not different than any other social media post, taking written content and posting it without a link or credit is generally a violation of the publication’s intellectual property. At the very least, it is a great way to burn a bridge with a valued media contact and their publication.

This applies to more than just website content. Marketing materials and other communications should not include unattributed quotes, segments or articles. A bylined article should also be considered the property of the publication once it has been submitted for publishing. Many publications will have language to this effect in the legal notices on their website or even request that you sign an author’s agreement before publication.

A Rule of Thumb

Many publications may be interested in giving special permission to use their content as long as they are given the proper credit. There can be a grey area here, but as a rule of thumb, when it comes to who owns the content, regardless of who wrote it, assume it belongs to the publication.  

Why Lack of a Crisis Communications Plan Should Terrify You

Crises come in many forms.

They could present as one (or more) negative online reviews of your business. Others manifest through the court system in the guise of lawsuits or other law enforcement actions involving executives, employees or clients/customers. Customer complaints, employee disputes or soured relations with the local community or other stakeholders can constitute critical crises situations. Still others might involve negative press coverage or complaints on social media. The worst crises involve issues of life and death.

In Crisis, You’re Surrounded. Sometimes Literally.

Try to imagine having your workplace or for senior leadership, your home, surrounded by numerous news vans for hours or even days; harassing your workers, customers, and neighbors relentlessly to secure comments about whatever negative issue has befallen your organization. Now try to imagine keeping to a business-as-usual schedule as the world puts you under an intense microscope.

You don’t have to be a crisis expert to recognize when your organization is mired in one. In 1964, U.S. Supreme Court Justice Potter Stewart described how he determined if something was obscene by famously saying, “I know it when I see it.” The same standard applies for leaders in determining if a crisis exists and how seriously it threatens the organization.

In more than 15 years of crisis communications management, I’ve seen all the above scenarios and quite a few more. Most of the organizations involved were wholly unprepared and found themselves, at best, struggling to manage.

Yes, they had lawyers. In nearly every case, the lawyers were excellent. But lawyers concern themselves with minimizing liability; their concern is rarely public opinion. And public opinion, frankly, will make or break a business’s bottom line or crush a non-profit’s fundraising capabilities, not to mention create reputational damage that can linger for years.

The Scariest Role Playing Ever

I like to pose the following to senior leaders, and while some may find these scenarios alarmist or extreme, they happened. My colleagues and I have managed them. Nearly every case was a bet-the-business situation and in each, the client lacked a crisis plan. This meant the best that could be done was to try to get their version of events out in front.

Imagine getting a text message or email that briefly outlines one of the following scenarios:

  • Your CFO has been arrested, is in custody and there will be a mug shot and perp walk in front of waiting press outside the police or district attorney’s office within the hour.
  • One of your workers has been killed on the job, either in a work-related accident or active shooter incident, and numerous local and national media are asking for a statement immediately.
  • Your CEO has been unexpectedly terminated or has died. The press are seeking an interview with whomever will take over, and the board of directors has called an emergency meeting expecting you to lay out how you will manage this situation.
  • Protesters have surrounded your business with signs and megaphones that are paralyzing your operations and drawing the attention of media regarding alleged poor worker conditions, or health code violations or claims that non-union labor was employed in a recent or ongoing renovation.
  • One of your leading donors has been arrested on charges of financial fraud and the media are reaching out asking if you will return the substantial funds provided to help compensate the donor’s alleged victims.
  • You have been accused of sexual harassment, law enforcement are at your door or on their way to interview you and the press have learned of this and are surrounding your workplace or home right now.

If you were involved in any of the above scenarios and you looked out your window, you would likely see a parade of news vans pulling up while your cell phone and email exploded with all manner of stakeholders asking questions. What would you do in the first 5 minutes? The first 10 minutes? The first hour? Most importantly, what would your plan be to manage the situation?

Calling the lawyers is a given, but they won’t manage the press.

Dozens of Questions at Once

What’s the process one follows to draft a statement the lawyers can live with that will also help the organization to try to stop the bleeding? Who will write that statement? How will they vet it? Does someone from the organization read the statement to the press? Is it emailed? What if the press keep asking questions? Do you do an interview, and if so, with which outlet? What are the pros and cons of doing an interview? Is the person to be interviewed media trained? Who is in charge of ongoing messaging? Who has to sign off on the messaging?

So many questions will emerge. Unfortunately, answers will be needed for most of those questions within the first hour or two. Otherwise, the situation can easily devolve to the point where it becomes nearly impossible to manage all the moving pieces.

Now, is every situation so extreme? No. A few bad reviews of your restaurant won’t prompt a media blitz. But, you’d better have a timely plan to message to your existing and prospective customers before reservations start canceling. However, every crisis scenario — from minor to major — requires timely communications, and that’s a challenge at best when there’s no plan and each passing hour might be damaging the organization.

If what I’ve shared raised an eyebrow or you actually tried to answer some of the above and struggled to clearly answer my questions even a little, then you are not prepared for a crisis. And you absolutely need to be.

Start By Asking for Help

Crisis communications planning, like life insurance, is something no one really wants to use. But to protect the people and things you care about you need both.

If you’re curious about what you might need in a crisis communications plan or what the process might look like for your organization to create one, get in touch with me.

Our agency offers free crisis communications planning consultation — which, of course, is different from crisis communications management. We do that too.  But if you’re planning for 2023 and beyond for your organization, consider putting the development of a crisis communications plan at the top of your priority list. Because when a crisis comes, and one will, not only will you know it when you see it, you’ll wish you had a robust and tested plan to address it.

Get to know Liz Rubino, Media Relations Coordinator

Public relations is all about relationships—the people behind the stories. That’s why we’re offering this blog series all about our team members. This isn’t about our professional accomplishments but who we are as people. We hope you have as much fun reading along as we do interviewing each other.

1. What got you interested in public relations?

I started out my career after graduating from college as a radiologic technologist. After my first child was born, I was a stay-at-home mom to my four children for many years. Our good friends across the street had six kids and they were friends with our kids. In 2007, Gary (the founder of Kimball Hughes PR and our good friend across the street), asked me if I would like to come and work for him. So here I am, 15 years later working in public relations.

2. Tell us about your favorite movie and what appeals most to you about it?

I have always liked movies that Robin Williams has been in and the variety of characters he has played. One of my favorite movies is Mrs. Doubtfire. He is a father who loves his kids and does just about anything to make sure he is a part of their lives each day. Although everything changes within the structure of the family, they were able to come together, compromise and still be a family, just in a different way.

3. What was the last, best book you read and what about it spoke to you?

I like to read mysteries and one author I enjoy is Agatha Christie. Murder on the Orient Express is one of my favorites that takes place on a train that has had to stop due to heavy snow. One of the main characters is detective Hercule Poirot, who appeared in many of Christie’s novels. He  is precise with his methods he uses to solve crimes and not shy in letting everyone know.

4. Tell us about a meaningful hobby or “outside of work” commitment that is important to you?

Becoming a mom has been one of the best parts of my life and now I am a grandmother for the first time. My 2-year-old grandson always puts a smile on my face. He has a great personality and is quite the character. I look forward to spending time with him each week.

5. Share a fun fact about you.

I moved to Florida after I got married and my husband signed me up for scuba diving classes without my knowledge. I was very nervous about taking the classes, but I ended up enjoying the lessons and being best in class on my test. I only got to go diving four times, but each time I enjoyed the experience and the beauty under the water.  

Thought Leadership: Why It Matters 

Thought leadership is vital to amplifying a business leader’s voice and staking their claim as an expert in their field. And if you think it can’t be a priority, consider: 

  • SEO benefits:  What drives the internet – and search engine algorithms – is new, original content. The SEO impact thought leadership offers professionals and their organizations is huge. Thought leaders should link relevant, high traffic articles within their pieces to support their research and help drive viewership. Additionally, thought leaders can link their pieces via social media to drive traffic from their network.
  • Position yourself as a leader: Many executives and organization leaders underestimate the value their experience and thinking can be to others. By sharing insights, opinions and advice, you can position yourself as someone customers, clients and other industry insiders turn to for guidance, all while enhancing your brand or market presence. 
  • Promote events: Thought leadership offers a unique tactic to promote your event, showcase the expertise of leaders at your event and position yourself in front of people who are or should be attending. For example, some of the following thought leadership pieces from the Insurance Industry Charitable Foundation (IICF) ahead of their Inclusion in Insurance Regional Forums this month in Insurance Journal and Risk & Insurance helped support those events while also advancing the reputations and insights of the authors, their companies and IICF while contributing to the furthering of key issues within the insurance industry. 

Our clients often benefit from thought leadership because furthering their reputation and recognition in their industries or marketplaces is mission critical. Also, when done well, thought leadership really works. Leaders across all industries have extensive experiences and insights to offer. Packaging that expertise into well-thought out, easy to absorb content, allows business leaders to maximize their exposure and drive organizational goals.  

Resolve to Rebuild in 2022

If 2020 was the year of the pivot, 2022 will be the year we rebuild. One of the primary ways businesses and nonprofits will do so is, in part, through raising the profiles and awareness of their brands, services and products.

Kimball Hughes Public Relations reached out to hundreds of for- and non-profit entities across the U.S. to get their take on 2022. We asked about opportunities and obstacles as well as about some of the fundamental tools and resources these entities use to connect with their audiences.

Opportunities & Challenges

One third of respondents reported that being seen as experts would be their top priority to achieving business or organizational goals in 2022. Maintaining or expanding awareness of their reputation among their key audiences came in second at 28.6 percent. Sales, product or service awareness and adding new products or services as tactics to improve performance in 2022 as paled in comparison.

The biggest challenge to growth in 2022 was seen as lack of brand or organizational awareness (72.7 percent). Limited marketing budgets ranked second as a challenge at 54.5 percent, while economic uncertainty and competition tied for third as other major obstacles in the new year.

The Road Ahead

To maximize the potential for raising brand awareness in the new year, securing media recognition and generating content will be essential.

Only 20 percent of the organizations we surveyed reported that being quoted or included in the media as a high priority. Fifty percent said it was one among many priorities, and 15 percent reported they were indifferent to seeing their brand represented in a reputable or industry-specific third-party content provider.

For those creating and publishing their own, non-social media content, nearly 23 percent say they do so daily.  Forty one percent produce their own website, blog or video content weekly, while another 23 percent do so monthly. Just over 13 percent report leaving content development, as a strategy to expand their reach and reputations, to “when time permits.”

Make a New Year’s Resolution

If you’re resolved to grow or expand your reputation or reach in 2022 — or you know of someone thinking about doing so — Kimball Hughes PR can help. Reach out to us today at info@kimballpr.com or call (610) 559-7585 and ask for a free consultation.

Giving Thanks: Acknowledging the Small but Mighty Work of The MOG Project

By Eileen Coyne, Director of Public Relations, Kimball Hughes Public Relations

During this season of Thanksgiving, we want to take time to recognize a special organization for the tremendous good they are doing and for the hope they are inspiring in at least one small part of the rare disease community.

The MOG Project is a young nonprofit working to promote awareness of a rare neuroinflammatory autoimmune disease found in people of all ages and children in particular. Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOG-AD) is a newer disease only recently identified via an antibody test in 2017. The disease causes dangerous inflammation in the brain, spinal cord and optic nerve. Due to its similarities with Multiple Sclerosis, it is often misdiagnosed as MS, which The MOG Project is fighting to change. Such a misdiagnosis can lead to incorrect treatments and prove harmful to the patient.

For us at Kimball Hughes Public Relations, we are passionate about donating our time to non-profit organizations, and for me, the MOG Project is personal.

In the Spring of 2020, during the height of the COVID-19 lockdowns, my elementary school-aged son was diagnosed with MOG-AD. Unfortunately, it took weeks of frightening symptoms including tear-inducing headaches, fevers, relentless vomiting, chronic fatigue, severe leg weakness, long hospital stays and the loss of nearly 20 percent of his body weight before the doctors came to a diagnosis. Lesions on his brain and spine found in an MRI led his team of physicians to ultimately test for MOG-AD. He was positive. And, as I understand it, we were lucky. My son was a patient at the Children’s Hospital of Philadelphia (CHOP), a leading pediatric institution recognized around the world for its research, treatment and care.

Again, we are fortunate to be a patient at CHOP where my son’s MOG-AD has been well managed. I am convinced that many hospitals around the country would not have known to test for this rare disease and may have even misdiagnosed him. He had two MOG-AD flares early on that manifested themselves by blurring and darkening his vision, but since receiving regular therapy, he has been healthy and well with 20/20 vision – attending school, playing sports and having fun with his friends.

A diagnosis of a rare disease, like MOG-AD, is more than just frightening. It can feel isolating at times. While I had the support of my family, friends and incredible colleagues at Kimball Hughes PR, I needed more. When I was ready to seek additional guidance and support, I came across The MOG Project. Little information was available online about MOG-AD, but The MOG Project was there to show me and my family we weren’t alone. Other patients, doctors and researchers are working diligently to encourage research, enhance treatments, and in due course, finding a cure. I immediately connected with the founder of The MOG Project Julia Lefelar and soon after Kimball Hughes PR began providing public relations services on a pro bono basis.

As public relations professionals, we inherently recognize the value in raising the public profiles of our clients. We understand the meaningful impact a smart media placement can have on an any organization – let alone an advocacy group so passionately dedicated to advancing awareness, educating the medical community, supporting patients and caregivers, and promoting research around a rare disease.

We hope to help this amazing group of remarkable individuals and industry-leading researchers bring MOG-AD to the forefront. Working with The MOG Project, the patients it supports and the influential doctors on its board, we’ve learned that in fighting for better outcomes for patients with one rare disease, we can help promote better outcomes for all. Please check out The MOG Project at https://mogproject.org/.