Monday, November 24, 2014

39th Birthday Campaign: Goal REACHED and EXCEEDED!

People must believe in each other, and feel that it can be done and must be done; in that way they are enormously strong. We must keep up each other's courage.

--Vincent Van Gogh--

I am super excited, bouncing off the walls, humbled, grateful, proud, amazed, overwhelmed, flipping out, jumping for joy, tickled pink and over the moon to report our total for my first fundraiser for Dr. ANS . . .

Hip Hip Hooray!

Yes, you read that correctly. . .

Thank you to everyone who believed in me, believed this needed to be done, believed this could be done and made this happen. By supporting this campaign, you have strengthened me and helped me to find my agency in ways you will never know.

Someone Wanted to Be Part of The Photo Shoot!

Your money will go directly to Dr. ANS and his research and will be incredibly impactful. We far surpassed my birthday wish of raising $3900! This is enough money for Dr. ANS to fund about 1 1/2 research assistants.

Dr. ANS and His Davidson Gear

Here is a little note of thanks from the Point Guard himself:

Dear friends and family of Emily:

I am so humbled and moved by your generosity and so grateful to Emily for choosing to celebrate her 39th year with a fundraising campaign for my research efforts. So often people think that because we are “Johns Hopkins” we cannot possibly need philanthropic support. I’m here to tell you this simply isn’t true and that is why I am so thankful for your donations. My clinic and research efforts are almost entirely funded by philanthropy. It’s the lifeblood of my work. 

I plan to use the dollars raised to hire a research assistant over the summer who helps me with data entry and analysis along with organizing and digitizing patient records. Having someone to help with this important work allows me more time to concentrate on my patients and accelerate my research.

In this season of thanksgiving, thank you for investing in me and my work and thank you for honoring Emily’s birthday wish in such a meaningful way. 


Dr. ANS and Me

Dr. ANS is a one man show. There is no nurse in his office. When you call the clinic line, you get HIM! He does all of his own charting, writes all of the prescriptions and mails them himself, answers his own phone, returns about 50 requests a week for consults or referrals, keeps in close contact with his patients (as evidenced by the hundreds of emails I have from him!), and writes personal thank you notes to those who support his work.

In addition to his time spent on research, in clinic with patients, keeping in contact with patients via email and telephone, teaching for the medical school, and being on hospital rounds, Dr. ANS is on call 24 hours a day, 365 days a year. 

He is an active participate in educating others about CFS and Dysautonomia through webinars and by serving on various committees related to CFS, such as the Institute of Medicine's committee to review whether or not a name change for CFS is warranted. He is also a member of the Research Advisory Council of the CFIDS Association of America and a member of the writing group of the IACFS/ME to produce a Pediatric Primer for Clinicians.

The breadth and scope of his work not only deeply impacts his patients, but it also deeply impacts all of us with this illness--patients, doctors treating us, and families coping with it. This is what makes me so passionate about supporting THIS doctor and HIS work--it extends far beyond the care I receive from him.

Wearing MY Davidson Gear and My 'Love Much, Live Well, Laugh Often' Necklace

His clinic is run almost entirely on philanthropy. Why? Because there is very little government  funding for or interest in CFS and Dysautonomia. So, patients like me and doctors like him rely on our money. 

As his endowment grows, the hope is that he will be able to have a part-time research assistant. Or, if 2.5 million happens to come along, a doctor to train with him.

Still Some Blue Hair In There!

As a patient of Dr. ANS for over ten years along with my deep personal experience and connection with these illnesses, I feel that my place to be impactful in this world is now with Dysautonomia and CFS.  I have waited too long to be an active participant in making a difference. I can be an authentic voice for this cause.

"If not now, when?"

I am ready now.

Gershwin Supports Our Efforts!

I would like to thank the following donors for their support of this incredible campaign. I have used first names only to protect privacy on my blog. If you donated and do not see your name, please contact me! Names are listed in the order donations were received.

Anonymous x 7
Angela K.
Marge R.
Dr. Marcy and Dr. Nick 
Tifni H.
Allison S.
Emily H.
Dayna T.
Stacey Y.
Paul K.
Katherine M.
Sarah S.
Patrick and Erin 
Aunt Paulette 
Aunt Jeanette and Uncle Howdy
Cousin Stephen and Cousin Beth
Elizabeth P.
Nicola H.
Cousin Jan and Cousin Mike
Danielle C.
James and Rachel
Dr. Barb S.
Deena and Jim
Andrea M.
Margaret and Kurt
Aunt Diane and Uncle Michael
Cousin Jay and Cousin Kim
Rebekah C.
Kimberly K.
Dad and Abbie
Pamela R.
Carol S.
Wilma S.
Jean K.
Brenda B.
Monica M.
Aunt Mo and Uncle Melvie
Aunt Linda and Uncle Dave
Aunt Jean
Uncle Jerry 
Susan B.
Margaret and Kurt
Cousin Rob
Amanda and J.D.
Hadley W.
Ellen S.
Mack and Robin
David H.
Betty M.
Corina M.
Teri K.
Uncle Dan and Aunt Pat
Uncle Dale and Aunt Norma
Uncle Crazy
Jen and Michael D.
Carrie and Sam 
Marla M.
Loralea W.
Whitney B.
Susannah P.
Dad and Abbie
Emily S.
Uncle Larry and Aunt Joan
Meredith H.
Evelyn  W.
Stephanie W.
Cousin Karen and Cousin Loren
Marjorie and Sean 
Lisa R.
Shauna G.
Kenneth B.


At times like these, THANK YOU never seems like enough. Thank you, my dear friends and family, for supporting me, loving me, journeying with me and blessing me every step of the way.  Dr. ANS and I thank you for giving us the support needed to help find answers for healing. A special thank you, as well, to Mom, Dad and Abbie--for without you none of this would be possible. It is you who sustain all that I am.

Thank you for making turning 39 the best birthday ever! :)



Relevant Blog Posts:

Over the past six weeks, I've blogged extensively about my fundraising efforts, Dr. ANS, my recent appointment with him, what my health is like day to day, and what Dysautonomia is.

Here is a recap (everything has a hot link embedded for you to click):

How your money matters:

How will the money you gave be IMPACTFUL?
Why did I decide to do this fundraising campaign?

Getting to Know Dr. ANS:

What is the JOB of a Point Guard?

Fundraising Fun: 

dyed my hair BLUE for Dysautonomia Awareness Month!
G and T "Go Blue" too.
How rewarding "Going Blue" has been.

Health Updates:

My WONDERFUL news from Dr. ANS!
How team work and new meds matter.
Life in 2012 as seen by Dr. ANS.
Life now as seen by Dr. ANS.

About my illnesses:

What are the types of Dysautonomia that I have?
How is it that I have both CFS and Dysautonomia?

Quite possibly this has been the BEST. Birthday. Ever.

1 comment:

Rachel Lundy said...

Yay for the best birthday ever! Congratulations on raising so much money. I'm proud of you and the effort you are putting into research and awareness. Way to go, Emily!