Multiple System Atrophy Coalition Annual Conference – 2014

For MSA Patients, Caregivers, and Families

Date: October 17-18, 2014

Location:

Crystal City, Virginia (Near Washington, DC)

Click Here to Register for The MSA Coalition Conference

About the Annual MSA Coalition Patient/Caregiver Conference

There is NO FEE for the Conference.  Food is provided by the Support Group on Friday Night (Hors d’oeuvres and Beverages) and Breakfast and Lunch Buffets on Saturday. Beverages will be provided throughout the day.
***IF anyone in your party requires a special diet, you must let us know specifically what your dietary requirements are when you make your reservation so we can give the hotel food supervisor notice of the special needs.

Attendees are responsible for their own travel and hotel expenses.

The MSA Coalition Annual Conference Sample Agenda

Tentative Schedule

Friday Evening: 6:00 P.M. – 9 P.M.
Social Hour/Reception for Patients, Caregivers, Family Members and Healthcare Professionals
Refreshments will be served.

Saturday:
7:30 A.M. Breakfast
9:00 A.M. Medical Presentations
10:30 A.M. Break & Snacks
10:45 A.M. Medical Presentations
12:00 Noon Lunch
1:00 P.M. Medical Presentations
2:15 P.M. Break & Snacks
2:30 P.M. Medical Panel – Q & A
4:00 P.M. Patient/Caregiver/Survivor Breakout Sessions
5:00 P.M. Conference Closing

– See more at: http://www.multiple-system-atrophy.org/annual-MSA-patient-caregiver-conference#sthash.u3d8P1C6.dpuf

I have been away for Easter – remembering the last Easter in Eildon with Jill was great – reliving all the great times  around the camp fire with the family and friends and doing it all over again. The boys are older and enjoyed the experience of the Egg hunt and the visit of the CFA firetruck collecting for the Royal Children’s Hospital and returning on Easter Sunday and throwing small Easter eggs into the crowd of children.

Having a coffee with Jill at Eildon

parrots join us each day at Eildon

Enjoying our camp fire

Lucas playing with their Easter present

I’ve found an Egg

CFA truck

Chris, Lucas and Pat

Riley playing Totem Tennis

Lucas sharing a coffee with his Grandma

The weather this year was much cooler with Easter falling later in the year and the camp fire was lit early in the morning and continued all day. We returned to a restaurant , Jill and I visited last year and  had another coffee with Jill.

Before Easter I went to Melbourne to baby sit the boys for a couple of days and again last week as they had both developed the flu and it was quite challenging . Lucas demanding much more attention than Riley – but we survived and the boys are back in Day Care. Lucas is now referring to me as Grand Pa and thats an improvement from a point.

The weather has changed and I figure it must be snowing somewhere as it is very cold. I went out to the farm to help Keiran and Louise collect fire wood. They left with a trailer full and me with some sore muscles. Pat is still not the best and has to stay inside for the warmth of the fire. We had a great lunch supplied by Louise and I headed home around 3  just in time to watch Geelong Cats win again although it was rather tense in the last quarter with them winning by only 5 points.

The house renovations are close to the end with some privacy screens still to be erected and the garden to be changed although it is much better than before. I have no doubt that Jill is watching every move I make and probably suggesting what should happen next.

I have joined several Facebook groups on genealogy and they are quite interesting. Also Lost places like Lost Maryborough, Lost Carisbrook, Lost Majorca and Lost Wangaratta the photos and comments being lodged bring back all sorts of memories and certainly generate family discussions. I have also met some cousins ( distant) that I didn’t know existed – One from Ireland.

See you soon on the net

It is 12 months today that we were parted and everyday I think of you and remember all the wonderful times we had together even those involving MSA. The last 11 years  that we spent together were filled with tears , anger sometimes not knowing why MSA had entered our lives. We still were able to have a wonderful time together – caravan holidays with the family, the weddings of our children and of course the arrival of two beautiful grandsons Riley & Lucas. That also includes 47 years of married life  and the births of 3 great children Michael , Allison & Christopher and their growing up into beautiful adults. The extended families and great friends that were always there for us.

Today as a family we were able to be together and raise a coffee mug for Jill – She will always be with us

OUR MSA  ANGEL

See you on the net after reliving  our last trip to Eildon

It is now several weeks since I started renovating the house and things are starting to take shape – I am certain that Jill would love what is happening but as usual “who is going to pay for it” would be her comment.

The roof has been cleaned and repointed, all the exterior timber work has been painted and Solar electric panels fitted this morning. The builder ” Man with Tools” has been fixing up all the minor problems with 45 year old timber. He arrived to lay some pavers but was reluctant to start until some waste pipe had been fixed. I had some shade cloth to replace which he did while waiting for the plumber. Still no plumber so we made an executive  decision to change the piping so the pavers could be laid.

Paving done and then the plumber arrived to do an alternative modification – pool fence in and new exterior blinds and now I am certain Jill would have approved.

See you soon on the net

Support March as MSA Awareness Month

Supported by: MSA Awareness

Please join me in supporting  March as Multiple System Atrophy (MSA) Awareness Month by signing onto the MSA Awareness Month resolution.

MSA is a rare neurodegenerative disorder that has no cure. It causes the progressive loss of motor skills, unlabored breathing, speech, and other basic functions, ultimately leading to death. People with MSA typically live only six to ten years after the first signs of symptoms. It affects approximately 4.6 individuals per 100,000 world wide.

Though little is known about the disease, it is not a black box. According to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, MSA symptoms are caused by the slow death of nerve cells that control many of the functions that were previously done automatically or with little effort, like breathing or walking. It is possible that the nerve cells die because of an accumulation of a protein in the brain and spinal cord called alpha-synuclein. Alpha-synuclein accumulation is also thought to play a role in other neurological diseases like Parkinson’s disease. This important but basic knowledge is not enough.

The first step in accelerating research into MSA’s causes, potential treatments, and a cure is to raise public awareness.

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Expressing support for designation of March 2014 as “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.

Whereas Multiple System Atrophy is a fatal neurological disease diagnosed in approximately 1000 patients in Australia;

Whereas as many as 3,000 more patients in Australia with Multiple System Atrophy are misdiagnosed with other more recognizable neurodegenerative disorders;

Whereas patients with Multiple System Atrophy lose the ability to walk, talk, chew, swallow, and even breathe over the course of a few years;

Whereas the incidence of Multiple System Atrophy in Australia has increased in recent years;

Whereas no specific risk factors or causes of Multiple System Atrophy have been identified;

Whereas there is currently no cure for Multiple System Atrophy;

Whereas the lack of awareness about Multiple System Atrophy has hindered research and the ability of researchers to obtain funding for their work;

Whereas public support and greater awareness of the need for research funding can aid in the discovery of the cause of and a cure for Multiple System Atrophy; and

Whereas March 2014 would be an appropriate month to designate as “Multiple System Atrophy Awareness Month”:
Now, therefore, be it Resolved, That the House of Representatives supports the designation of “Multiple System Atrophy Awareness Month” to increase public awareness of this progressive neurodegenerative disorder that affects the autonomic functions of the body.