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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You Know You Want One of These

**NOTE: Register or Order by October 4th**

I admit it. I am super excited about these Rowe's Research Runners t-shirts which prominently display our super cool logo as well as the words Chronic Fatigue Syndrome and Dysuatonomia.

I loved being a part of the entire process of creating the logo, designing the shirts, and choosing the shirts.

That means I picked a super soft, comfy and lightweight tri-blend shirt by Bella + Canvas in a beautiful heather royal blue. No scratchy shirts for RRR. :)  

On Friday I placed our first order and we have sold over 50 shirts! That's more than $500 towards research!

More than $10 from the sale of each shirt goes to research. Shipping (if you are out of the area) is on me. Yup, that's right. On me.

If you live out of town and would still like a shirt, I cannot guarantee that it will arrive before the actual walk date of October 20th because of the printing time (I expect them the next batch to be ready October 18th, but I did order extras in some sizes in the first printing.)

Here's the scoop:

If you are participating in the local event, you will get one of these shirts as part of your $20 registration fee.

I encourage you to choose to be a participant--either virtually or in person--but if you cannot be at the event and would still like a shirt, the cut off is October 4th.

Let's #goblue on October 20th (and all of October) to raise awareness of Chronic Fatigue Syndrome and Dysautonomia.

Click here if you would like to purchase a T-shirt separately

or 

Click here if you plan to attend the event on October 20th (it's gonna be awesome!)

Remember, either way, if you want to be guaranteed a shirt please register or order by OCTOBER 4th.

Onward and Upward,

Emily

It's Time to Roll!

Images by Andrea Harmen

Superheroes. Face painting. Food. Friends. Community. Music. Awareness.

That means Rowe's Research Runners is READY to Roll!

Dysautonomia Awareness Month is here!

I am inviting all of my friends to REGISTER NOW to join us on October 20th for our 2nd Annual Walk/Run/Roll and Reception.

**To guarantee a shirt you must register by October 4**

Our Social Media and Website Volunteer Extraordinaire and her daughter

Registration is $20 and includes your t-shirt (which I will post about tomorrow).

Children under 12 are FREE!

A fundraising goal of $100 is suggested. Please consider posting that you are attending and raising money and see what you can raise. Every dollar truly does count.

Oh! There Goes Dad!

Last year's event was such an amazing success--beyond anything I could have imagined. As a team RRR raised over $20,000 towards research, and our local event connected many people living with these illnesses as well as raised awareness. 

That lead to my desire to make this year's event bigger and try to reach more people.

Raffle!

The raffle items from Dragonfly Therapeutic Massage and Day Spa, Happy Valley Improv and Brenda Horner Artworks are amazing! Bring some extra cash so you can win!

Food!

We will, of course, have food, including our signature cupcakes with blue frosting.

Dogs!

Dogs are welcome!

Why? Because our pets are such an important part of the chronic illness experience.

A band called Sauce (a group of Bellefonte High School seniors) will be playing.

We're keeping the music chill so that people with these illnesses will not be too overstimulated by the sound.

Why music?

Because it, too, is an important part of living with and coping with chronic illness.

New Friends also Living with these Illnesses 

Other people with these illnesses will be there for you to meet. 

#friends

And other friends you know will be there.

#friends

And of course, there will be the Alliance of Heroic Hearts to remind us all that we are superheroes!

There will be face-painting and kids toys too!

#dadandabbie

The event is ready to go.

(You've wondered where I've been, right? Planning this!)

All that we need is for you to be there or be square.

#neighborsfor43years

Let's #goblue #runforrowe and have some fun!

While these may be serious illnesses, this promises to be an uplifting and fun event.

Remember:

Superheroes. Face painting. Food. Friends. Community. Music. Awareness.

See you there!

#rowesresearchrunners

Onward and Upward,

Emily

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

Monday Dog Blog: National Dog Day

We're not sure if you heard or not, but Sunday was National Dog Day!

Honestly, Mommy says EVERY day is National Dog Day in our house. 

But she DID give us some extra attention.

And promised us she'd settle into the recliner with us and report on the shenanigans of the last few months because we realized she has not been blogging about us. 

What?!

Neglect!

Right?

Okay, you're not buying this neglect thing are you?

Why not?

Because we look like all we do is lounge around on comfy pillows and hang out in the yard?

You're probably right about that!

We invite you to take a look at what's been happening the past few months around here.

Because we think we are great at making people smile.

Especially Mommy....

and Mom.

Some days are just SO hard around here.

I should be pet like this ALL DAY LONG!

We go to pretty places.

And are so tired later!

We move the pillows on the sofa.

We help with 'work'.

We garden.

As you can tell the hard work exhausts us and sometimes Tovah falls asleep in her food bowl!

It's probably all of that bunny-watching she does.

We will wait for Mommy to come back and sit with us!

And are sad when someone leaves to go somewhere.

We read the newspaper with Mom.

And rearrange the bath mat for Mommy.

Sometimes we even snuggle next to one another peacefully!

Gershwin is sad when no one is with him on the recliner.

We got these toys when we passed our Intermediate Trick Dog class!

Tovah loves bunnies!

Mommy wonders how Gershwin finds this comfy.

All day, every day we are a prince and a princess in this house.

Every day is National Dog Day here. Just as it should be.

We are loved beyond measure.

Happy Monday! 

Blessings,

Tovah Rose and Gershwin