5.26.18 Sunday the 13th

6am flights after a two hour power nap are tough, but we made it work.

Luckily, Tanner was on our flight and he literally took care of everything – including drink tickets 😉 Everyone needs a Tanner. We learned that Texas is considered “Tanner Country” and after 4 days watching him work and seeing his passion for the cause, it was obvious why.

We got to the hotel in time to order room service and nap. First meeting we attended was called Advocacy 101 which solidified the truth that I was not prepared for the task at hand. We discussed the different asks we were making in our meetings at Capitol Hill. We learned about the process it takes for an item to become a bill. We learned about why we were moving on certain asks that had momentum rather than starting out from scratch. We learned about the difference in making asks under me NIH and the DOD, because the benefits of both allocations have tremendous impacts on research. I’m very thankful that ALSA provided this information because without it Carlie and I were lost. Also, I’m thankful to each of you that signed the letters – we made quite the showing.

The opening session brought familiar faces that I was excited to meet:

Y’all I felt like a groupie, these are big names in the fight against ALS and we are just chatting it up. I get emails from these people about the strides they’re making and the countless hours of dedication to the cause, but to hear them speak about the impact of my attendance and how I’ve helped the cause, wow just wow.

We also got a chance to meet the other conference attendees from our state. ALS has many forms of abuse on it’s victims and effects everyone differently so it was interesting to meet families just like mine, ALS warriors just like me who are from the same place. We had over 20 representatives from Texas there to raise our voices and fight ALS together.

Sunday the 13th was also Mother’s Day. I’m lucky to be surrounded by so many powerful, wonderful, strong willed, bossy Mothers. Especially my sweet Carlie who gave up her day with this cheesy smile to be in DC with me.

5.24.18 Cousin Taylor

Meet my cousin, Taylor. He’s pretty great and is doing great things for lots of people. His brand, Surf & Turf Golf was recently featured in Fore Magazine – see the article here.

At a time when the game and its leadership seems opaquely caught between honoring traditions and finding ways to bring in new players, Surf & Turf’s genuine exuberance for bring people together through golf seems to come at an ideal time.” – Fore Magazine

Surf & Turf is part of everyone’s wardrobe thanks to Cousin Taylor.

Preceding the tournament, Surf & Turf announced its new Course to Cause for a Cause initiative, in which the company will now donate five percent of its online sales each month to a “Champion” in need of funds.” – Fore Magazine

SunnyStrong is excited to be the #CoursetoCoastforaCause for the month of May. Check Out Surf & Turf to get your hands on their latest hats and apparel while

contributing to SunnyStrong.

5.23.18 Friday the 11th

Catching everyone up on one of the most impactful weeks of my life. It all started with a date with my husband to ALS Clinic with Dr. Heitzman and his team. Kenneth and I rarely have day dates, so this was a real treat. ALS is tough on all of us, but Kenneth gets the brunt of my attitude, helplessness, and frustrations. I’m thankful to do life with this man, he’s my best choice.

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Clinic was great, my breathing up, my weight down which we’re working on stabilizing, and our favorite Wests and Fruges were there to cause trouble with us. We got LOTS of signatures for the Advocacy Conference, but I’ll tell you about those later this week.

I’ve developed this insane anxiety, it’s all consuming and exhausting. Pair that with all of the death surrounding me lately, and I’ve been a depressed wreck of a human being. Dr. Heitzman upped my anti-depressant (yipee) and wrote me a prescription for a weighted blanket. I’ve done a lot of research on these blankeys and I’m excited to try it, having a hard time justifying a $140 blanket though. It’ll work itself out, and hopefully help with my anxiety and depression.

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From clinic I headed south to Waco to surprise my best friend at her playoff softball game. Three years ago during her playoff game for a different school she had her players wear purple ribbons for me and ALS awareness month. I’ve been trying to get her back since then.

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If you haven’t figured out yet, almost every friend I have is a coach. Going to games and celebrating their hard work, dedication to success, and passion for their students is easily one of my favorite things to do. I call constant “dibs on the coach”. My girls took home some awesome hardware in their respective sports.

Ended the night with a last minute decision to slumber party at my sisters in Waco. Growing up, her house was always my away from reality hideout. The phone wasn’t for me, I didn’t have a schedule to uphold, and I could sleep as long and hard as I wanted to. Not much has changed except there are now cute teenagers living there that are good snugglers and fun to hang out with.

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5.18.18 I Miss My Friends

“And with a broken wing, She still sings, She keeps an eye over the sky. With a broken wing, She carries her dreams, Man you oughta see her fly” – Martina McBride

We had to get creative in DC with our picture because I forgot to print out actual pics. Mad props to Carlie’s awesome interpretation of my girls. I’m raising my voice to fight ALS because these friends of mine no longer have a voice to raise.

Dewie Quortrup passed in October 2016 We met at my very first walk in Dallas in October 2015. She was drawn to my cousins bulldog, Walter, and we became instant friends. Her husband Pete was our lead this week on Capitol Hill and Dewie was with us in spirit.

Christi Zimmerman passed in July 2017, just one week before her daughters first birthday. We were introduced through the ALS Association Texas Chapter as I was seeking to connect with someone who had been diagnosed, processed that, and then chose to become pregnant. All of the literature I could find was on women diagnosed during or after pregnancy and I wanted to meet someone that chose motherhood over diagnosis. I learned so much from Christi about life, love, marriage, and motherhood while fighting ALS.

Sharon Hughes passed in April 2018. We were introduced through a mutual friend and immediately bonded through our fight. We kept in touch regularly and encouraged each other through prayer and love. Her daughters are now part of my family, forever entwined as my soul sisters.

Susan Wade passed in May of 2018. We attended our very first clinic together at Texas Neurology on the day of the freak snow apocalypse in Feb 2015. We were from the same area and had many friends in common. One of my favorite memories is of her telling the story of receiving a rock polisher from her husband. He thought he did so good on the gift and she just laughed at his earnest attempt to surprise her. I recently learned that she donated her body to science so that further research could be done.

Meg MacDonald passed in May 2015. We became friends through writing and shared all of the gory details of our daily struggles with ALS. We chatted almost every day about something, usually nothing major but always in a safe place to vent. She had gone MIA on me recently so I tracked down her care services person at the conference this week to try and reach her another way. The news of her passing has rocked me to my core. I am not dealing with this news very well.

I hate ALS. I hate that it’s hurting my friends. I’m raising my voice for these friends that I have loved and lost. Something has to be done, my heart can’t take much more.

PSA #3: “Good Night”

Jason Walker was diagnosed with ALS 14 years ago. He started dating his wife three years after his diagnosis, and they have been married for 4 years. Their daughter, Eloise, was born 17 months ago. He has used a tracheotomy and feeding tube since just after his wedding. He says the experience of appearing in a PSA to raise awareness of the disease was outstanding.

Watch Here

PSA #2: “Little Things”

Donna Boring is a mother of three who was diagnosed with ALS in 2008. She has been an ALS advocate for years. Her Walk to Defeat ALS team, Donna’s Diva’s, will be competing in their sixth walk to raise awareness and funding this year, and she plans to attend The ALS Association’s National ALS Advocacy Conference in Washington, D.C., later this month. She works with her local The ALS Association chapter to help spread awareness of the disease and says, “If I have to be the face of ALS, it’s not a bad face to have.”

VIew Here

ALSA

PSA #1: “A Few Words”

David McClain, a husband, father, and grandfather who was diagnosed with ALS in 2003, spent 25 years working in sales for a local steel manufacturer before the disease robbed him of his career. He got engaged to his wife 33 years ago, two weeks after they met. A former high school athlete and second-degree blackbelt in Tae Kwon Do, he enjoyed camping, hunting, and fishing before the disease robbed him of the ability to perform physical activities.

https://youtu.be/vHuIbIeahXw

ALSA

The ALS Association Launches PSA Campaign Showing ‘The Reality of ALS’

Washington, D.C., (May 8, 2018) — The ALS Association has released a series of public service announcements (PSAs) highlighting what life is like with ALS. Throughout May, which is ALS Awareness Month, the Association will promote and distribute three separate PSAs showing “The Reality of ALS.”

“Many people have heard of ALS, but they may not know much about the disease,” said Brian Frederick, executive vice president of communications of The ALS Association. “Our goal with this PSA campaign is to show what it’s like to live with ALS and the devastating impact the disease has on families. The pieces reflect the grace, beauty, and dignity that so many people with ALS possess, while also acknowledging the harsh truth that this disease is cruel and fatal.”

ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure.

“The best part about filming this commercial was that everything about it was real,” said Jason Walker, an Ohio man living with ALS, who is featured in the Association’s “Good Night” PSA. “There was very little stress because we weren’t trying to act for a particular role. It truly was a film crew filming part of our everyday routine, which makes it really special.”

The PSAs were shot by Boston ad agency MMB, on location in Connecticut, Ohio, and Pennsylvania, and feature real people living with ALS and their families.

“This project was incredibly important to us. ALS is such a terrible disease and we haven’t seen that reality conveyed often enough,” said Travis Robertson, executive creative director for MMB. “Aside from the obvious physical implications, there are emotional implications to ALS that trickle down through the entire family. These spots seek to capture that in a way that is both cinematic and brutally self-aware.”