Episode #2 – Rob Long: All American Advocate

Big thanks to Rob Long​ from Uplifting Athletes​ for joining us on Episode #2. Hear his incredible story and learn more about the 2018 Young Investigator Draft taking place in Philadelphia August 18th- you don’t want to miss it!

Podcast: https://anchor.fm/rareunplugged/episodes/Episode-2-Rob-Long-All-American-Advocate-e1v84k

Young Investigator Draft: https://give.upliftingathletes.org/event/2018-young-investigator-draft/e182298

A Little Monday Motivation



Happy Monday everyone- we’re almost through the day. As of right now there are only 55 days until I will be at Lambeau Field for the opening game and kickoff of football season. This Green Bay Packers girl cannot wait! My Monday motivation is one of my fav quotes from of course one of my fav legends- Vince Lombardi. I’ve used this in multiple presentations before and it’s one of those quotes I should probably write on my mirror or my hand- I need this as a daily reminder.

So many times in our lives we find ourselves wanting more, wishing on what could have beens and what ifs’. For those of us in the rare disease space this rings even more true. I wish I would have taken more science classes in college, I wish I could go back to med school or even just take more classes to understand genetics. I also wish someone would finish my laundry, pickup my groceries and for the love of God figure out how to get rid of the mosquitos at night. We always have a wish list and that list grows the more we become involved in something that we love- our passions.

If you’ve read my article on Advocacy you know and are probably part of my crew that fell into this space out of sheer winning/losing the genetic lottery (how do you look at it?). We are anxious to improve science, to further research and to make a difference, find a cure and create the best possible support group for our community. It gets overwhelming. OMG it can be so much sometimes. For every item we cross off the list we add 7 more. The more passionate we get the more we want to do- it can be exhausting and tiring and exciting and fulfilling.

I feel like a huge part of me writing this is to yell at my own self- slow down, take a deep breath and focus on what you CAN do- not what you cannot do. We can’t measure ourselves when we are so far spent and have totally piled endless lists on our plates. We all have different plates- stop trying to pile on your pile what someone else has on theirs. We all handle everything differently and at our own pace- thank goodness because we all have talents and needs to fill.

“….we do with what we have.” If you are feeling stressed, tired or overwhelmed at where to get started or how to even finish something- stop right now and make a list. What are your 3 strengths? What about these can you use to incorporate into getting what you need to get done? Rather than trying to fit into a mold and be someone we are not, be who you are and use your own strengths. When we do what we can with what we have, we are able to make measurable differences.

My youngest daughter recently tried out for the next level of competition team at her dance studio. She came home a little disappointed because she was asked to do a certain turn across the floor – one that she hadn’t learned on her previous team. She was really scared that she wouldn’t make it just because she didn’t know this move. When I asked her about the rest of the audition she said she tried extra hard at what she did know to make up for it. She made the team! She made it because she took what she knew and she gave it everything she had. It didn’t matter that she didn’t know that specific turn- she did her best at what she did know and it shined right on to her moving up to the next level of competition team. Interestingly enough, in the last 5 weeks of summer technique class, that non-existent know how of that turn has evolved into her not only learning it but pushing herself to be almost perfect at it (we are never perfect)!

Friends, take what you have and go for it! Find friends and colleagues to fill in the gaps- shine where you know you can. Take what you have and use those skills, that experience, that talent to complete your list, your goals and to feel accomplished in everything you do. You’re a rockstar and you totally got this! Oh- and Go Pack Go!

Loves and hope, Anne



I recently co-authored an article about what to do the day after receiving a diagnosis. Steps to take, tips to follow and how to find support. I have since been thinking about it and what I did with my life after my son was diagnosed with an ultra-rare disease. As caregivers and patients, some of us go full force in to the world of advocacy, a world most of us never imagined.

Not very many of us get into rare disease advocacy by career choice. It’s not something we sat down with our high school guidance counselor and mapped out which classes to take. It’s not on the list of majors at the university I attended and I’ve yet to meet someone who dreamed about this as a career choice as a child (raise your hand if you wanted to be a fighter pilot like me- thank you Top Gun). Many professionals within the industry have been trained on this matter, have taken classes and focused their career on it. To them I say thank you for choosing a noble profession that brings light into the lives of so many families across the world. But lets talk about the majority of rare disease advocates today. The ones I meet at random hotels across the country, our luggage tattered from traveling across the country in the name of rare disease.

We’re Learning

At some point we were known by another title. Some of us were stay at home moms, attorneys, physicians, teachers, cosmetologists, mortgage lenders and more. Many of us were in the middle of our college careers trying to decide what we wanted to do with our lives when a disease altered that course. We didn’t come into this role as a professional. In the middle of trying to remember how to spell a drug with the name like Eculizumab, we suddenly are researching about clinical trials and emailing everyone at the bottom of a journal article at 3am. Do we know what we are doing? Sometimes. Never. Once in a while. We are grabbing at straws and trying to make sense of them. And then something incredible starts happening- we begin to understand. On a whole new level that we never thought possible, medical terms and diagnostic processes begin to make sense. In the middle of the night, on napkins during making lunch for kids, and epiphanies while taking a never hot enough shower, we begin to make plans. Ideas begin to flow and some days its a rush to get them all out on paper. Questions to ask a medical team, thoughts to post on social media, ideas to reach out to other patients and in the middle of all these thoughts, advocates feel hope. We think “this could be it” and we move forward. Advocates can’t be stopped- we have missions to fulfill.

Have Patience With Us

The majority of our colleagues have had years of school learning medical terms, how to run trials and more. We are frantically learning new vocabulary, understanding how industry works and trying to figure out who key players are and where to go for help. All of this while juggling doctor appointments, family schedules, relationships and a never-ending to do list. In college I used to stay up late studying for a test, pass it the next morning and barely remember what it was about after lunch. We are not learning this information to pass a quiz or finish an essay. We are learning all of this because lives depend on it. Please be patient- we are getting our education on the fly but I promise that what we are taking in is going to last a lifetime and make a difference. Your patience is support. Your support in helping us understand is hope. And hope may be all we have sometimes but it’s going to make a big difference for someone else. Be patient- we are changing the world.

We’re Tired

Sleep. I’m sorry, explain what that is to me because I vaguely remember what a full nights sleep used to be. As an advocate, especially if you are a patient or a caregiver, your role doesn’t work 8-5pm. It’s 24 hours, 7 days a week, no time off and plan on spending your holidays thinking about it. This role isn’t something that we clock in and out of each day- it stays with us. It can be exhausting but if it wasn’t so rewarding we would clock out and call it quits. We adapt and learn how to nap and figure out the best ways to stay awake. We cover dark circles under our eyes with makeup, fill up on caffeine, snore on airplanes and nod off during lectures. We do the best we can knowing that we want to do more- sighing as we realize just how much more has to be done. If we have a glazed look in our eyes, please take us to a corner and give us a blanket. Not possible I know. Instead, ask us questions about our patients and our community because nothing gets us more excited and feeling alive than advocating for the people we love the most.

We Need Each Other

I love when a group of advocates gather together at the end of a conference night. When we talk about our disease, our communities, our patients and our progress. We share ideas, pass names of experts around and cheer each other on. We give advice and warnings. We laugh (a lot) and cry (a lot more). We hug, we pass Kleenex around and we wipe away tears and buy a round of drinks. No one understands the life of an advocate better than another one. Don’t criticize or judge- we have more than enough of that from everyone else. Support each other and love each other. Take care of yourself and love yourself so you can pass it along! I have my own PTSD and downfalls, I make mistakes and I say the wrong thing sometimes (shh.. I’ll never admit that to my kids). We are emotional and on edge. We need to build each other up and bring out the best in each other. We all have keys to rare disease that will help the next person- share your knowledge, your resources but most importantly, share your smile.

Advocacy is Amazing

I never wanted my sons disease to define him and somehow it has defined me. I took the fight or flight theory and chose to fight hard. I can’t imagine what life would be without all the incredible advocates, clinicians and industry leaders I have connected with. Each one has taught me something new, expanded my dreams of treatments and cures and ultimately challenged me to do more and become more. It’s not a career choice showcased on a college tour, it’s not a weekend hobby and it’s not something that you can brush off easily. Advocacy, in all its forms, is the most incredible act of service and love that I have come across. It is people from all around the world with one goal in mind- fulfilling the hope that all rare disease families desperately hold on to. Advocacy is amazing.