Hope, Love, and Connection and lots of good stuff

This was an eventful week: lots of ALS related good stuff, and a family wedding.

ALS good stuff #1: HOPE

Stan and I participated in a webinar from MT Pharma, the manufacturer of the newly approved ALS drug, Radicava, which should be available in August. It has been shown to significantly slow the progression of ALS. ALS patients can sign up for email updates at radicava.com. In July there will be a physician’s form for neurologists to use to enroll their patients. Then MT Pharma will work with patient’s insurance companies. The drug will be an hour long infusion every day for two weeks, then two weeks off, two weeks on, etc. It is exciting and gives hope because it’s the first new drug for ALS in 20 years.

ALS good stuff #2: LOVE 

At our ALS Association of Nevada Support Group meeting on Thursday another ALS patient, Deb, who you may remember had the awesome car wash mitts on her wheelchair foot rests,

talked about her caregiver, who brought a sheepskin blanket and she loved the feel of it and found it very comforting. Her son took her to Build a Bear and she picked a panda with sheepskin-type fur. Then her son decided to make two so another ALS patient could have one. She presented it to me! The adoption certificate says it was built for mom’s friend. 💜 He is so cute and comforting and that was absolutely an act of love.

ALS good stuff #3: HOPE, LOVE, and CONNECTION

On Saturday we had the Reno/Sparks Walk to Defeat ALS and the weather was absolutely perfect: blue skies, no wind, temperatures in the 70s. Caughlin Ranch Elementary School (CRES), where I worked, formed Team Meg. This was another act of love and I appreciate the support so much.

Amanda, CRES mom and Team Captain, with her daughter Capriel and her husband Tony.
Almost all of Team Meg. It was hard to herd everyone in for the photo
With Rene, who now has my job. We worked together for several years and we are neighbors. And yes I brought the panda! My mouth feels better with a napkin in and I don’t care how it looks. Plus I don’t drool. Rene also brought a bunch of bright green ballooons, which I loved.
Marci, another CRES mom, with her youngest.
Holly, one of the Gifted and Talented teachers at CRES
Sandy, a Special Education Resource teacher at CRES 

With Natasha, another Gifted and Talented teacher at CRES. Her daughter and daughter’s boyfriend walked too.

With April, an Autism Strategies teacher at CRES. I was writing a note to April, not conversing with the panda!

Here you can see the sign that the panda was wearing: Ride to Defeat ALS, Never Give Up

April and Laura. I gave Laura my camera to be the official Team Meg photographer. Thanks also to Stan who took the pre-walk photos.

Mark, the CRES lunch manager with his daughter, who I put in charge of the panda during the walk. 

Andy, former CRES student; Afek, current CRES student; and Shefer, former CRES student

It was so nice to see so many people I used to work with and around and to meet their kids too. There were also other staff members and parents who contributed but did not walk. Thank you CRES community – you are the best.

Stan’s cousin Lisa also came out to support my walk, although she has her own health issues that make walking diffucult.

I met some other ALS patients during the walk. Linda and Andy are my new friends. Andy has ALS.

I talked with other ALS patients and family members, some that I had met through the support group, and some that I was able to tell about the support group. This included one mom in a wheelchair who spoke only a little English. When I heard her son translate what I wrote into Spanish for her I began writing in Spanish, with a little help from her son. I was able to tell them about the support group too and the son put the information in his phone.

The entire walk raised over $25,000. Truly a morning of love, connection, and hope for what that money can do to defeat ALS. You can still donate to Team Meg at http://web.alsa.org/site/TR/Walks/Nevada?team_id=359152&pg=team&fr_id=12347

Other good stuff: Love (Family Wedding)

We went home from the walk and got ready to go to a 4 pm wedding in Graeagle, California (about an hour and a half drive). Lisa rode up with us. The groom, Clint, is Lisa’s step brother. 

Uncle Keith and Gloria, the stepfather and mother of the groom
Stan and Lisa heading for their seats, happy to be able to drink beer during the ceremony.
The best man is Vince, the brother of the groom.
Clint and Ashlee Jade with the Presbytarian minister from the Carson City church Clint’s family belongs to.
Andy and Stan during the photos after the wedding
The newlyweds, Clint and Ashlee Jade Treadway
Clint’s dance with his mother, Gloria
Lisa with her dad, Stan’s Uncle Keith

Cornhole fun and practice for the National YFALS Corntoss Challenge to END ALS on June 4 to raise money for ALS TDI. Stan and Andy are a team, and they don’t want mom on their team. I had fun but I couldn’t even hit the board! Please consider a donation to Stan and Andy’s team for the Young Faces of ALS
http://yfals.als.net/page.aspx?t=2413

It was a fun and beautiful wedding with connections with family we don’t see often enough. I also got to know Gloria’s sister-in-law who is a physical therapist who has worked with ALS patients. We will keep in touch.

We stayed at the Chalet View Lodge in Portola so we wouldn’t have a long drive after the wedding. It was a lovely resort and there were a couple of bonuses included: more corntoss practice before breakfast and we ran into an old friend.

With Bill Erlach, who was 10 when I first came to Reno and stayed with his family.

Bill Erlach and his wife Alexis were staying at the resort with a group of Bill’s high school friends on an annual weekend event where they go to a different Sierra Resort each year. They were enjoying golf and bicycling. I love running into old friends. I shared with Bill that I remember going on a hike with him and his dog Remington, when he was 10. They lived south of Rattlesnake Mountain at the time and we hiked through fields towards Rattlesnake (an area that is all developed now).

It was truly a full week of Love, Hope, and Connection.

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