It's That Time: Birthday Donations to Rowe's Research Runners

Dear Friends and Family:

It's that time of year again: Rowe's Research Runners and my birthday all in ONE month. :) 

That means I've dyed my hair blue (that was SO much fun!), and I'm here to ask you to donate to the cause that is near and dear to my heart. The mission of Rowe's Research Runners (RRR) is to fundraise, increase awareness, and facilitate connections for people with chronic fatigue syndrome (CFS), dysautonomia and related illnesses. 

Our big event is less than two weeks away, on October 20^th. (It's not too late to register! Click HERE for local event details.)

Thank you to everyone who has joined the team, been fundraising, volunteered for the event, purchased a t-shirt or donated!

Here's a little quote from Dr. Rowe about last year's event, which raised over $20,000!

“Emily and her team in State College have been awesome,” writes Dr. Rowe. “With the donations they and our Baltimore group raised from last year’s walk, I was able to hire a summer research student who herself is a patient in the clinic, and who is interested in a medical career. That student worked on the data analysis and literature reviews for two papers in the past 3 months, and helped with the design and planning of the next phase of our work. She brought a welcome infusion of youth, energy, and computer savvy. In a field without much federal funding for clinical research, the funds from the walk are really important, allowing us to keep a research team together so we can continue to make progress on improving the treatment of potentially disabling conditions like orthostatic intolerance and ME/CFS.”

I have been a direct beneficiary of Dr. Rowe's ground-breaking research. All I want for my birthday, for my life, and for the rest of those living with these illnesses is to see forward progress in research so that we can all live our fullest lives. Because of Dr. Rowe, I'll be spending my birthday week doing things I could never have imagined doing even five years ago.

This week, I'll be going out to dinner with my boyfriend, having dinner with Dad and Abbie, heading with Mom to a nearby small town to try out the new gluten-free bakery/cafe, and seeing Joshua Bell in concert (and going to the reception afterwards to meet him!). 

Every day that I am able to do things without suffering all of the time, I owe to Dr. Rowe. Please join me in celebration of my birthday and the health that I do have by donating in my honor to Dr. Rowe.

We have so much left to do. People like me simply dream of living a fuller, higher quality of life. I would love to be able to function at a level higher than 60% and this cannot be done without the help of people like you and the dedication of the handful of specialists, like Dr. Rowe.

Dr. Rowe has been churning out research much faster, thanks to the funding and help he has been getting from YOU, my generous donors. 

Please remember that EVERY single dollar you donate goes directly to research. You can see from the quote above how impactful your donations are.

Our goal this year? To raise $25,000 towards research. Our team has currently raised $11,961 (between Baltimore and State College).

Please click HERE to donate.

If you prefer to mail a check, you can mail it to:

·       The Fund for Johns Hopkins Medicine
ATTN: Chelsea Kling & JHCC Race
750 E. Pratt St.
Suite 1700
Baltimore, MD 21202

***Please make sure to designate your donation to both Emily Steffensmeier and Rowe's Research Runners.

Thank you in advance for your generosity. 

Onward and Upward,

Emily

P.S. I sent out a version of this in email, but apparently it went to some people's junk mail (whaattt?!), so I'm posting it as a blog as well. :)

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See YOU on October 20th!

See that guy? 

That's Dr. Rowe jumping for joy over last year's successful event and in anticipation of this year's bigger and better event!

Please check out our website:

https://support.hopkinschildrens.org/rowesresearchrunners

Mark your calendars for October 20th, 2018!

Participants at Last Year's Local Event
We had 50 people for our first walk!

Over the past year, I've been working to create a true community through Rowe's Research Runners, and now I can't wait to tell you all about our local event.

I hope to see as many of you as possible at this family-friendly, dog-friendly, whatever your ability-friendly event!

Our One Mile Walk/Run/Roll 2017

We are so excited about this year's local event in State College featuring Alliance of Heroic Hearts (a perfect fit for the heroes who care for us and the heroic warriors living with chronic illness)!

We will have face painting, games for the kids and food. Plus, kids under 12 are FREE! 

Dogs are welcome!

Our raffle includes 4 tickets to Happy Valley Improv, an original calligraphy print by Brenda Horner Artworks, and a one hour massage from Dragonfly Therapeutic Massage and Day Spa!

Photography credit to Andrea Harmen

Please REGISTER as soon as possible! 

To guarantee you get a shirt, register by October 4th.

(The shirts are super cool! And SOFT!)

Registration is $20. 

PLEASE consider setting a fundraising goal (if you don't meet it that's okay) and spreading the word about your participation in this event and why you are raising money. 

My buddy Bethany :)

In the next few blogs, I'll also be sharing more ways for you to participate, whether it be in Baltimore, in State College or virtually; by being a team member or simply being at the event in State College; or by donating.

However you want to be involved, Rowe's Research Runners welcomes you and thanks you!

We hope to see you on October 20th!

Blessings,

Emily

What is Rowe's Research Runners?

The mission of RRR is to fundraise, increase awareness and facilitate connections for people with chronic fatigue syndrome (CFS), dysautonomia and related illnesses.  

I am thrilled to announce that Rowe's Research Runners is growing and blossoming as we try to reach more people with these illnesses, create awareness and fundraise for Dr. Rowe.

If you've been wondering why I've disappeared from social media and blogging, it's because I've been busy working on Rowe's Research Runners. 

As we approach October, I'm thrilled to unveil the work of the past year, and share with you more about how you can help us achieve our mission!

I am SO excited about this gorgeous logo that communicates the various manifestations of the illness, the hope to go from bedridden to standing, and the forward motion that we hope our group can create!

Stay tuned...

Blessings,

Emily

Getting Our Blue On (In Pictures)...

Photo Shoot with the Local Newspaper!

I can't believe we are exactly ONE WEEK away from both the Baltimore Run AND our local walk for Rowe's Research Runners!

We have been so busy #gettingourblueon here for Dysautonomia and Chronic Fatigue Awareness that I haven't had time to blog. 

I'm also having a major setback, which has made keeping up even harder. 

The energy I do have is focused on the many facets of raising awareness and funds for Dysautonomia and Chronic Fatigue Syndrome and supporting Dr. Rowe.

 This is the cause of my heart, the cause I am called to do all that I can for.

I'd like to share what's been keeping us busy here...

in pictures.

I mean, those of us with brain fog LOVE pictures over text, right?

So, sit back and enjoy, while I show you how we've been getting our blue on. 

To start of the month, Mom and I got our hair dyed blue together. In solidarity. 

This was SO out of the box for me. I loved it so much.

This was part of my #griefjourney and #awareness.

I got touches of pink in my hair for my friends, Marjie, Amy, Elizabeth, Karson, Abby and Amelia who are either currently going through treatment, are survivors, or have left this Earth.

I can't believe Mom put blue in her hair too! 

Even the stylist's daughter decided to get her blue on too!

Check out Abbie's hair!

Sadly, my blue washed out immediately, and we are not sure why. :(

Let's pause to take a break from the fun stuff to bring you up to speed. As many of you know, I am the Team Captain for Rowe's Research Runners as part of the Johns Hopkins Children's Center's participation in the Baltimore Running Festival.

Our Rowe's Research Runners t-shirts arrived on Thursday.

I was SO excited to get them, I tried it on right away.

With my Halloween leggings. 

Ha!

We will be wearing these shirts at the local walk on the 21st!

Yes, you read that right!

In addition to working with the team for Hopkins, I wanted to have a local event on the same day to raise awareness and build community with others. I am meeting more and more people locally with the same illnesses.

We're making lots of cupcakes with blue frosting.

The bracelets are here and ready for our runners/walkers/rollers.

We'll be having a low-key, casual one mile walk/run/roll and reception, raffling off a massage, eating lots of blue cupcakes, and most importantly, raising awareness. 

Friends and family are already supporting the local walk and raising awareness. Here's one family who is #allin for Rowe's Research Runners. 

#marcfriedenbergforcongress

And, of course, I made sure to find the perfect nail color!

If you are interested in the local walk, please click here for all of the details.

We would love to have you join us.

Also, for those of you who get the paper, be sure to check out Sunday's Good Life section for a feature on the walk, as well as the illnesses we seek to raise awareness and funds for.

Rowe's Research Runners is an amazing team of 20 people, including friends, providers, patients, and Dr. Rowe himself. 

Being Team Captain has been a joy! I love getting to know the team, hear each person's story, and learn how Dr. Rowe has also touched their lives.

I'm so very excited for and proud of our team!

One of those team members is my local friend, Megan, who also has Dysautonomia. 

She got a surprise donation from the author Laura Hillenbrand, who also has Chronic Fatigue Syndrome.

Megan and I met through our GI doc! Haha!

Click here to read her story.

#chronicfriends

Awareness is spreading! 

My dear friends from Davidson, Hadley and Kristina, are both traveling to Baltimore to run the race. How do I ever, ever thank them for this?

In addition, Kristina and her husband, Eric, are naturopaths (and I am their patient). Not only are they traveling to Baltimore to run, where they will get to meet Dr. Rowe, but they have created this amazing display at their office! 

Click here to read their story of why they are running and about our friendship.

 You know you want to click to see a pic of Kris and me in 1997. We look like babies!

And here's Hadley! She visited last summer! :) 

My dear friend, Cindy, is also participating as a virtual runner.

Oh. My. Heart.

My friend and neighbor, Bethany, also has Dysautonmia, and she has been doing amazing work with her fundraising. I am so proud--not just of her fundraising--but of her. 

How we both have found ourselves with the same illness we will likely never know, but our lifetime friendship has grown stronger and Bethany has been doing amazing work for the team and the local walk. We are also having a friendly competition over who can raise the most money. Haha.

Click here to read her story.

While Lauren, Daria, Maria and Michaela aren't on the team, some will be at the local walk. I have met all of these young women in the past year (and Lauren's mama Myrta). 

These illnesses are not rare. They are an epidemic. 

I hope the walk will unite more of us in the area who live with CFS and Dysautonomia.

All of us with Dysautonomia and Chronic Fatigue Syndrome want more awareness and understanding of these complex illnesses. 

We want to reduce the stigma.

And we want to support the best providers, educators, and physicians available. 

That is why Rowe's Research Runners--Megan, Bethany, Mom, Kristina, Hadley, Eric, Colleen, Kelsey, Megan, Pacey, Christen, Dr. Rowe, Carla, Jennifer, Sarah, Elizabeth, Cindy, Susan, Dr. Edwards, and myself--are #runningforrowe.

I can think of no better way to give back to the doctor who has given so much, not only to me, but to hundreds of other patients. 

In truth, if you have Chronic Fatigue or Dysautonomia, your life has been touched by this one human being.

I am crazy passionate about raising awareness and fundraising for Dr. Rowe.

Someday, someday I want these words that Laura Hillenbrand has used to describe CFS to be history. 

I want answers. 

I want a cure. 

I want a test. 

I want to know the cause. 

I want treatments. 

If you want me to imitate Beaker perfectly, I can do that too.

If you are able, please consider attending the local walk OR making a donation to our team.

For more about Rowe's Research Runners click here.

For a link to my story and fundraising page click here.

I encourage you to read the stories of the team members (click on Roster), who are all inspiring and passionate about this cause.

Out of 281 participants for Johns Hopkins Children's Center, I am currently in 3rd place for the entire hospital. Four of our participants are in the Top 15. Way to go Bethany, Dr. Rowe and Colleen!

Thank you to everyone who has helped us get this far!

Our TEAM is in 2nd place, which is incredible given that Dr. Rowe is just ONE physician and not a multiple physician department--a true testament to how beloved he is to his patients and how uniquely gifted he is in the care and treatment of his patients while tirelessly investing in research to investigate the complexities of the CFS puzzle.  (Thanks to Colleen for her articulate words here!)

Will you help me get to 2nd place? And keep our team in 2nd place too?

Team goal: $18,000

Personal Goal: $8,000

Thank you.

And don't forget to get your blue on during the rest of the month of October.

Every bit of awareness, every dollar towards research, every piece of the puzzle matters. 

The photo above, captured on a recent Fall day, reminds me of the brightness and beauty of an illness-free, stigma-free life. It also reminds me of the hope and beauty that is always present, even on the hard days.

#onwardandupward #rowesresearchrunners #runningforrowe #awareness #chronicfatigue #dysautonomia #thankyou #keepupthegoodwork #getyourblueon

Blessings,

Emily