I Loved Someone Who Was Rare

By Theresa Liddy DolgeChief Media Relations Officer, Tonic Life Communications

Some people never meet their hero, but I gave birth to mine. My daughter, Angelina, was born with an incredibly rare disease called Neonatal Marfan Syndrome, which is a connective tissue disorder. There is no cure.

Angelina was born on February 5, 2008, and just 23 days later, the very first Rare Disease Day was held. I am truly amazed at how far society has come in raising awareness of rare diseases in the last ten years, and I remain hopeful for what the future may hold.

As someone who works in healthcare public relations, I am often part of the very team looking to tell stories like my own to help the 30 million Americans living with rare diseases. Every time I touch a rare disease account I feel uniquely positioned to provide insights only someone who has walked this path would know such as:

  • Get the right diagnosis. Initially my daughter was diagnosed with Beal’s Syndrome. I didn’t learn she had Neonatal Marfan Syndrome until she was 10 months old.
  • Find a support system. I was desperate to find other moms like myself and canvased every corner of the internet to find them. Discovering The Marfan Foundation was life-changing for me. I am still friends with a mom in Australia through an amazing platform they have called NMF Connect.
  • Build an integrated medical team. I saw eight different specialists ranging from orthopedic surgeons to cardiologists. Making sure they all talked with one another and were aware of what everyone else was doing saved me a lot of time.

Perhaps, even more importantly I can relate with many mom warriors of rare disease children because:

  • I have slept on a hospital couch for countless, consecutive nights
  • I have cried in the shower alone because I didn’t want my family to know how upset I was when other kids and parents pointed and stared at my child
  • I have become a ‘doctor without a diploma,’ knowledgeable about all things related to my daughter’s disease
  • I have watched my child on life support and receiving bags and bags of donated blood (so please give blood if you can)

Angelina died in 2010, so being able to continue to work in the rare disease space helps me to feel like my daughter did not die in vain.

I am reminded each year on Rare Disease Day of all we have accomplished and everything we have left to overcome.

The kindest action a person can do is to encourage others despite their own pain.

We are all worth a cure. Never lose hope.

Four Key Takeaways from #BlogHer18 Health

Co-Authored By: Samantha Bolinski, Senior Account Executive and Kate Callan, SVP, Social Strategy

We had the amazing opportunity to attend the 2018 BlogHer conference where, for the first time, the focus was on health. Held in the uber-chic neighborhood of Tribeca, New York, the conference was swarming with women from all areas of the health and wellness online media space. The conference kicked off with a networking/cocktail hour followed by the 2018 Voices of the Year Honorees ceremony where the list of recipients included inspiring and revolutionary women such as Chelsea Clinton, Carmen Perez, Linda Sarsour, Tamika Mallory, Jodi Kantor, Megan Twohey and Tarana Burke, to name a few (ya know, NBD).

Following an epic night with several women who, quite frankly, changed the world, we were ready to tackle day two of #BlogHer18 Health! The agenda was jammed packed with sessions led by some pretty fierce, self-made influencers in the health/wellness industry, both on and offline.

Topics included personal stories from women who have overcome significant obstacles in their own lives and became advocates for others’ health, overviews of disease awareness health campaigns, engaging with and educating the media, using video and photos to enhance storytelling and how film can be a catalyst for conversations around health, to name a few.

As we reflect on BlogHer18 Health, here are our four key takeaways:

    1. Authenticity is key to engagement. Authenticity is what an audience craves because it shows vulnerability, particularly in the health industry. It’s all about being honest and true, and unapologetically you. Authenticity is what invites your audience to open up and engage via comments, liking and direct messaging. An engaged audience that connects with the true persona of an influencer or brand is more valuable than a huge audience that is not engaged. Influencers are savvy and those with a strong focus on authenticity will pull this through to the brands they chose to align with.
    2. Know your audience, and tailor content for them and each platform you use. In addition to authenticity, tailoring content based on platforms is critical in managing and maintaining a community. During BlogHer, influencers shared that their followers visit them for different things on different platforms and they tailor content to what works best for each audience. Knowing this, community managers must remember to identify the right place for the right content at the right time to be successful.
    3. Online connections are powerful ways to manage health issues. Today, communities of all types have been reliant on social media to connect with others going through similar experiences. Patient communities are looking to hear from fellow patients to help support and guide them on their health journey. While medical information from a physician cannot be replaced, online patient communities often supplement these discussions with real life experiences.
    4. “Your best idea doesn’t come to you while you’re texting.” Arianna Huffington said it best! Despite co-founding an online media group, Arianna has become an advocate for the need to unplug and destress in a world that is always connected. During her closing talk, she reminded everyone how important it is to disconnect and talk to your peers to conceptualize new ideas. Instead of emailing or texting back and forth, host a brainstorm or take a (device-free) walk. Do not neglect exercising your creative side!

For more from behind-the-scenes at #BlogHer18 Health, follow us on Instagram (@Toniclc) to view highlights from the conference floor and on Twitter (@Toniclc) to read the insights we heard throughout the day!

Lastly, huge thank you to SheKnows Media for a wonderful and educational experience!

Share a recap of our takeaways with this cool infographic. [Click to view full PDF]