Thursday, October 09, 2014

Dysautonomia Awareness Month: Why I'm Fundraising and How to Give

This Flower Had a Special Name--I Can't Remember!

I am excited to report that my fundraising page is up and running!

When I went to visit my friend Marjie a couple of weekends ago, I had a few ideas percolating in my head about raising awareness of Dysautonomia in October. Marjie, who is a breast cancer and leukemia survivor, is busy fundraising and raising awareness like crazy this month. She's a pro at it. 

She really encouraged me to use some of my new energy to pursue my desire to raise more awareness and money for Dysautonomia--hence the Emily who is seriously pumped about October. I am grateful to her for encouraging me to take action and solidify my ideas into something really tangible.

I really want make the most of my improved health, my birthday, and my overall desire to celebrate LIFE these days. What are better ways to do this than to think about making an impact while also celebrating a new year of life? 

As I reach the last year of my 30's, I am feeling better physically--and probably emotionally too--than I did at 30. Now that's something to CELEBRATE!

A Trip To My Favorite State Park

Now that I feel truly settled into the correct diagnosis after all of these years, I feel like I can genuinely focus my energy on causes most helpful to bringing treatment to patients like myself. I never felt sure about the Lyme world: I tried to become engaged, I tried to raise money, but my heart seemed to tell me maybe I didn't really have Lyme.

I know for sure that I have Dysautonomia and Chronic Fatigue Syndrome, and that these are the two major illnesses that have made me sick for the past 16 years. 

What I also know for sure is that Dr. ANS is one of the world's best physicians in these fields--both as a clinician and a researcher.

The Lake Was Covered In Water Lilies

For the past 10 years, Dr. ANS has been my point guard. He has been on call 24/7, he has responded to hundreds of emails, he has spent hours on the telephone with me, he has responded to pages while attending basketball games with his son, he has encouraged me through the darkest days of my life, and he has stayed faithful in his efforts to improve my health despite how refractory I have been in response to treatments. He promises me that while we have seen great improvements this year, we will never stop half way!

He is a gem. And every person who has ever come in contact with him at meetings or as a patient will vouch for this. I am not sure if I have even told the story of how I became a patient of Dr. ANS', but it is one I will share some day.

So, when I looked into fundraising options, it was a no-brainer that the best person to make use of the funds would be Dr. ANS and his Chronic Fatigue Clinic. 

I have been working with him and one of the development office personnel to create a peer-to-peer fundraising page.

Look Closely for Blooms

What I also know for sure is that without patients, parents, friends, families, and those who are affected by these illnesses doing the ground work to support researchers and clinicians, we will not get far with treatment options. 

We don't have a celebrity who is the face of these illnesses. We don't have good tests for them. We don't have good treatments for them. We have very few physicians to treat them. And we have very little government funding for them. 

We have to do this ourselves. We have to do this bit by bit, dollar by dollar, supporting the dedicated few researchers who truly care about patients like myself.

My sense of clarity and focus is as it has never been before. I know that this is part of my purpose in life--to speak out, to raise money, and to be heard--especially as my health allows.

Blooming Water Lilies

Every year for the past 10 years, my Mom, Dad, Abbie and I have given as much money as we can to Dr. ANS as a very small thank you for treatment that I otherwise receive without paying him (since it is all email, phone, etc.). We've had to balance what we can give with the tremendous out-of-pocket medical expenses. So, what we give him never feels like 'enough'. How do you thank the person that most works to keep you alive and to keep your time alive the best it can be? That is the something that can never be repaid. 

When I told Dr. ANS that I wanted to fundraise for him, he was very touched. And I was equally moved that I could even be in a place physically that I could think about taking on such a project.

More Water Lilies

So, I hope you'll join me in my efforts to support Dr. ANS and his research. Johns Hopkins has launched a peer-to-peer fundraising page for me.  It's my fault for getting the ball rolling a little late, hence the delay in not getting the campaign started at the beginning of the month, but I received a birthday surprise today that my page was ready!

In honor of October, a month full of meaningful dates--my birthday, Dysautonomia Awareness Month, the Jewish New Year--I have launched a fundraising page with the following goal:

To raise $3900 in 39 Days in Honor of my 39th Birthday.

This is enough money to fund a research assistant for Dr. ANS for one semester. I wanted a quantifiable goal, one in which you--as my donors--could truly see that your money would be used in a concrete way. Last year alone, Dr. ANS published four research papers. We cannot afford to be in a world without his input, his voice, and his passion.

I hope you'll joining me in celebrating this new year by helping me to reach this goal. We will all be better for it.

Please click here to make your donation.



No comments: