What a weekend! We attended the ALS Seminar at The Queen's Conference Center today. The conference was well attended by families affected by ALS, friends, vendors, and physicians. The topics discussed ranged from wills and trusts, care giving and an update on the current ALS research. Kimi Chun made a great presentation on the different aspects of caregiving which included the model Share the Care, that Peggy Chun used successfully. It was also nice to have a speaker from San Francisco to give an updated research development report. Michael Shannon, Director of Development for ALS Therapy Development Institute (TDI), spoke on the current research for ALS and answered questions from the audience. There were many prizes given out and I would have won, but Jan accidentally through my ticket away. Oh well! However, overall the conference was a success.
(me with Michael Shannon of ALSTDI)
(Chester, Gloria and me after the seminar)
Thank you to Daniel and Natalie for coming and supporting Jan and I today. We always love it when any of you kids can attend these ALS events with us to learn more about this disease that is plaguing my body. I love all of you.
Jan and I, went to visit Kathy's brother, Brian, at the Convalescent Center of Honolulu. Brian, has been living with ALS for 7 years and has been on a vent for the last 5 years. Brian has a beautiful smile and a positive attitude. We were able to bring him some leis to beautify his room and have aroma therapy smelling of ginger.
Tomorrow is our first Share the Care meeting/party where Kimi Chun will host the party and explain to all my wonderful friends, what is Share the Care. Our response to this meeting/party was just fantastic! Thank you all my dear friends, you are the angels of my life. Like I said before, don't be afraid that if you come, you will be committed. This is an opportunity for you to come and learn what Share the Care is all about. I am excited to see you all tomorrow!
You all have hearts of gold and smiles of the rainbow.
Goodnight Spike, Goodnight Bella! Nana loves you!
Aloha, Vi
Hi Vi:
ReplyDeleteThanks for the plug. Your family is incredible! Your sons and daughter were so welcoming to me an my girlfriend Danee up at Rocky Point. I had fun out in the water.
For us haoles that was about 4-5 feet. Daniel informed me that by Hawaii standards that was about 2 feet. Shoulder high anyway. I went and did a little research and saw how famous your surfing family is. I didn't realize I was surfing with Hawaiian royalty. Everyone is so humble.
I will keep you posted on TDI developments. You can ping me anytime to ask any question. As well, anyone is welcome to give me a ring if you get to San Francisco. Would do what I can to be accommodating. Thanks for your spirit and your passion. I look forward to visiting again soon.
Mike
mshannon@als.net
VI !!!!! I have been reunited with my computer and am stoked to catch up on all that you've been up to. This tool is beautiful. I can hear you so clearly and see you though the pictures. What a great idea and thank you for this gift you have given us all, sharing your life with all of us through your blog. Natalie you are awsome! Vi, Sounds like you are enjoying your family. Now that I am home Al and I would like to coordinate with you and Jan some dates that we can come over and visit with you. We love you so much.
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