A REASON TO BELIEVE

In September of 1992, Samantha was born.

In March of 1993, Samantha had her first surgery.

Between 1993 and 2002, Samantha had numerous surgeries.

Between 2002 and 2006, Samantha had more surgeries.

In 2006, Samantha had a life-changing surgery. We met Dr. Menezes.

In the years to follow several more non-lifethreatening surgeries.

In 2015, Samantha finally knew what was causing … well everything.

In 2016 we met Dr. Dietz and Dr. Gunnay and the WORLD just got even BRIGHTER!

In 2018 yup … another surgery.

In 2019, Samantha advocates on Capitol Hill!  LOOK OUT WORLD!

____________________________________________________________________________________________

Grit and Grace. Mr. Mcgraw let us know if you need a publicist, (wink wink).

I decided to blog today to reflect upon about Samantha’s work with the EveryDay Life Foundation and YARR in D.C.

About this time last week, you were just wrapping up and heading home. I followed along at home so proud of the ambitious wisdom with sincerest gratitude and joy, while you attended with other advocates and feeling so thankful while your group represented so many across the country who left “us” behind without warning and without a diagnosis.  I can only sit back, reflect and “feel” a little guilt inside knowing that we are so lucky. You are right it’s our time to continue to learn and educate others to “pay it forward”!

A year ago Samantha joined the group of young leaders, Young Adult Representatives of RDLA (YARR). She’s been working remotely with them for awhile. We recently were able to connect with a small group of young ladies about Samantha’s age while visting D.C. in October. One thing led to another and after researching additional ways to get involved she was encouraged to apply for a role in this year’s Rare Disease Week.

Samantha has been working behind the scenes with several groups locally and finally she got her chance! Samantha has a story to tell and knows first hand that with the help of others she would not be where she is today without them. I also want to thank Danae Bartley for her mentorship and guidance through this last year.

__________________________________________________________________________________________

Samantha was so excited to be selected to participate in the week’s activities – in celebration! A celebration that all her hard work to continue on this journey to learn how live healthy and it is paying off! She was able to combine her passion for communicating other’s stories along with her own educational experiences.  She’s able to give to others a knowledge that only “real world” experiences give and at the same time overcome the struggle that once weighed her down. Her “resume” on paper is quite astonishing (almost unbelievable) as she continued on her “own” path while never really revealing to anyone (her peers especially) what really was going on “on the inside”. Honestly it was too hard for me to even explain everything to her much less for anyone around us to understand. My heart is heavy as I can only imagine the thousand’s of people out there that are walking through life undiagnosed and still haven’t found their light to follow.

… I am NOT great sharing my world with other’s either. It’s hard. It’s easy being a Mom of two most courageous kids. Often times I consider myself totally clueless (I’ve been told that a time or two.) Crazy I may be but oh how truly proud I am to be able to finally tell our story. THANK YOU to everyone that has been there from the beginning and who have had to listen to me. Thank you for allowing me to rant on. I sent this note to Dr. Menezes Tuesday morning before Samantha set out for Capital Hill. Dr. Menezes you knew all along!

________________________________________________________________________________________

NOTE TO DR. MENEZES:

“Hey there!! I wanted to share with you this link. The link below will guide you along with the live events from Rare Disease Week. Without you and your confidence in her… giving her the chance to choose to be positive for herself (SAM, AKA MONA LISA) and opportunity to show how only SAM can conquer her healthcare concerns (her fears) and to take charge for herself … I’m not sure where we would be. Your continued interest in her. Your brilliance. Your kindness and patience. You met Samantha as a scared 7th Grader not truly understanding her diagnosis and really why she was sitting in a hospital in Iowa with her Grandfather, her Dad and myself. And the in the following weeks learning about Genetics, MRI’s and what is a “HERKEY”. Humor is the key and a smile will always set one apart. Samantha, the young adult you helped nuture along now has life by the tail with a passion and educational (medical degree by experience) background with a presence that continues to explode with deep gratitude and a strong heart! It means so much. We believe fate often intervened when a higher authority lead us to Iowa. (Not the Grandfather) ha but we are thankful we were lead to you and your team. Here’s the link. She is a representative from Kentucky in a place her great grandfather and grandfather visited often with historical significance. Best always – Pam https://rareadvocates.org/rdw/ “

RARE DISEASE ADVOCACY MOVEMENT? WHY SHOULD I CARE? WHY WE SHOULD ALL CARE:

It wasn’t until 2009 that the Rare Disease Advocacy movement was realized.

The Mission is simple: Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases and is designed to help patients make their voices heard to change public policy. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. RDLA’s goal is to bring the rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard on Capitol Hill and in State government.

BETTER SAID:

Krissy Anderson wrote this review and posted on the Facebook page in 2015.

Krissy writes “This is an important and vital part of today’s unique situation in medical care. With so many changes and challenges taking place, we must focus our attention on education, communications and research. Additionally, an investigative-type of approach to bringing about awareness in every arena, coupled with the highest level of respect from writers/media/educators, are key to the those three elements now and in the future. The most effective and efficient ways of moving forward will begin with Rare Diseases deserving the attention that has lacked in the past. Our lives begin with education, and education must be at the top of the list for all of us: advocates, patients, caregivers, medical personnel, scientists, politicians, pharmaceutical companies, insurance firms and pertinent government agencies. We must come together to achieve great meetings of the minds. And treating all forms of education, communications and research as tools for success, where we can implement sets of responsibilities and services to every level — the office staff all the way up to the President’s office — we can create, reach, touch and achieve the goals necessary to bring about treatments, cures and fully top-notch care. “

No truer words are written. By this approach even the most common of diseases are diagnosed possibly sooner and would possibly find cures for the diseases to even the simplest form of “normal” conditions. What is Normal?

WHY DOES THE NATIONAL INSTITUTE OF HEALTH MATTER? The Role it plays.

Many of us also rely upon the The National Institute of Health. Many of my friends ask my why “NIH”? That’s for another day but … The National Institute of Health is a federally funded facility that for more information about an amazing The National Institutes of Health is made up of 27 different components called Institutes and Centers. Each has its own specific research agenda, often focusing on particular diseases or body systems. All but three of these components receive their funding directly from Congress, and administrate their own budgets. NIH leadership plays an active role in shaping the agency’s research planning, activities, and outlook.

Oh GOSH – I guess I could write a book but I’ll spare you the time –

Samantha and all of your counterparts … THANK YOU! Thank you for taking time out of your work schedules to advocate on our countries behalf.  Back home in Kentucky our state recently proposed a bill sitting presently on Governor Bevin’s desk,  … If you haven’t heard about it look it up! And THANK you Julie Raque Adams for your work to bring it back to Frankfort  …

 

Governor Matt Bevin please sign SB16 “The Kentucky Rare Disease Advisory Council.” Please share!
National Organization for Rare Disorders, Inc. (NORD)
Have a great weekend!!!
MARCH ON!

 

 

 

Advertisements
Categories:

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s