Happy Summer and Happy Independence Day!!!!
I do want to wholeheartedly thank our last Feature at ROM, Cooper & Kenneally for the wonderful Feature they put on for our full house once again at ROM. I also wish to thank each and every one of YOU that continue to Support and continue to enlighten our audiences at Every Venue we have been so very blessed to have had since Mike & I began ROM on 1-12-09. When I do say YOU I am in fact to speaking Everyone that comes to ROM in any capacity. I do wish t thank all of you that bring the specialty foods, the setting up and the tearing down of the room, the washing of our dishes at the end of the night, (Thanks Junko Ogawa), to the break down at the end of any always late running show so that we can allow all that wish to play/perform, to do just that!!! It seems like it was yesterday. It is because of you, our dear ROMulin Community that we continue to grow and prosper!!!!
Many thanks and we certainly hope to see you all at our next ROM when we have the incomparable Carolyn Waters grace our stage as our Feature on July 11, 2011.
I do have some new stuff to share. If you were NOT at our last ROM I announced 2 new books that I am now circulating around the audience for all to look at and share some of the Great Memories & Friends we have made at ROM.
Book #1 is a photo Album in NO particular order for the moment but looking for any great idea's to help with that. You very well may see YOU in this book!!!
Book #2 is our "Memories at ROM" binder. It's intent is to have each and every one of you that have Featured at ROM to please honor us with your Autograph and say whatever you wish on your very own flier. I do NOT have every flier as with some computer glitches there are some I have lost so If you have one of your own at home please autograph it and bring it in with you next time you join us at ROM!
It should be a lot of fun and is all a continuing part of the Museum of Fine Artist's at
Roslindale Open Mike.
A Couple of in house ROM issues I would like to reach out for Volunteer's for just about anything but we have the hardest working HOST's in the IMMEDIATE Roslindale Open Mike area in Mike Delaney!!! Mike and I have discussed this and we would love to start having guest HOST's for however much of the show you my wish to help introduce our incredible performers!!! WE all know that Mike NOT only sets up all that is ROM audio but also does do much of the stage set-up for each performer.I am quite sure like me, YOU would like to see & hear Mike Delaney get to play more Music, (his Love), than he is currently able to do with all his house responsibilities!!! In the same breath wish to thank Ken Porter for his non-stop help in all aspects of stage set up, audio sit in person, being our ROM house Percussionist that just as Mike, will play music with anyone that asks!!! My thanks so much to Darwin MacDonald for now being our Full time ROM stage lighting design Volunteer!!!! Please contact me at neal@rolsindaleopenmike.org for any Volunteer interests you may be able to offer and/or suggest for our ROM Community.
I truly want to give Mike & Ken a well deserved rest and get to hear them do more Music!!!! They will both still be in the ROM ROOM and are willing to mentor anyone that is interested!! The final house issue is due to our ever growing crowd size since I do try to be as fair as I can possibly be with regard to getting all to Play. Given that, I do request that NO ONE make any changes to our ROM sign up board so I can be accountable to all I have committed to. Please see me before making ANY even agreed upon changes to the board as there are 2 of us keeping the exact lists of performers for each venue. There are nights that are so busy, I do NOT get a chance write down our Order before changes have been made. For those of you that know my memory, you know that can be an issue since I often forget my own name!! I thank you all in advance for your understanding and cooperation with this matter!!!
On behalf of Susan Siegel, Craig Sonnenfeld, Jason Goldfeder and myself to all of you that took part in the most incredible Fundraiser for ALS that was held at Roslindale Congregational Church on
6-26-11. Our thanks to all audience members, our thanks to all companies and organizations that donated items for both the door prizes, raffles and Silent auctions to raise both Monies and awareness of ALS.
Our thanks to our performers for that evening which included, Lee Adler, Sam Bayer, Mike Delaney, Dean Denniston, Steve Rapson, Junko Ogawa, Bill Duncan, Jon Waterman, Dawn Frost, Carolyn Waters and Craig Sonnenfeld. I will be inserting a letter written by Jason Goldfeder the nephew of Susan and Craig's that does have ALS and asked to have this note read to our audience by Susan at the beginning of this program! it was and it certainly set the tone in such an educational and personal way, I thought you would enjoy it!!
A couple upcoming Event reminders:
Tues. eve July 5th Al Gould will feature at Ellen Schmidt's Nourish Restaurant Open Mike. For all Ellen's other venues please see her website at www.ellenschmidt.com
Sunday July 10th our dear friend Christiana Gerstner will be having her Fireside Coffeehouse 2-4 PM at the Emmanuel Lutheran Church, 24 Berwick St. Norwood,Ma This months feature will be Ryan, Ortolani & Fleming. to sign up in advance contact firesidecoffeehouse@gmail.com
On July 15th Junko Ogawa with guest performer Bill Duncan & Craig Sonnenfeld will split the Feature at: The Java Room in Chelmsford, Ma. 8-10 PM. For all the specifics and other gigs please see Junko's website www.junkosings.com
I will insert the letter from Jason Goldfeder here for you to better learn about ALS and there is still time to donate!
Good Evening, my name is Jason Goldfeder and I have Amyotrophic Lateral Sclerosis or ALS, which is better known as Lou Gehrig’s Disease. Before I tell you a little bit about myself, how I was diagnosed and how ALS has impacted my life, I would like to thank my Aunt Susan and Uncle Craig for organizing this fundraiser and Craig for performing.
I was diagnosed with ALS in November of 2004 at the young age of 34. The only symptom that I had at the time was my left foot was dropping on the floor. I am an internist in St. Louis and ALS never even crossed my mind as my diagnosis. I saw a neurologist about three months after I first noticed any symptoms. I was admitted to the hospital and had numerous tests performed in the next 24 hours. I was told that I had ALS only 48 hours after I first sought medical care. Typically, it takes one to two years after a patient first notices symptoms to make a diagnosis of ALS. At the recommendations of my diagnosing physician, I sought a second opinion and came to Boston to Mass General to see one of the world’s experts on ALS.
The average age of diagnosis is in the 50’s. The average life expectancy for someone with newly diagnosed ALS is only two to three years. The most common cause of death is from pulmonary reasons because of the affect that ALS has on the diaphragm, which is the muscle that controls breathing. Approximately 20% of patients live more than five years and 10% of patients live more than ten years.
I had very few symptoms when I was diagnosed, but my symptoms continued to progress over the next several years. In the winter and spring of 2005, my legs got much stiffer, but my leg strength was still normal. In the spring of 2005, my arms started to get affected. Unfortunately, my arms got weaker much faster than my legs did. As 2005 progressed, I required more and more assistive devices to help me walk. Initially, I wore ankle-foot orthotics on my legs to prevent me from falling. Then, I started using a cane, then a walker to allow me to ambulate. In the summer of 2006, I started using a motorized wheelchair full time. I used multiple splints on my fingers and hands to straighten them out as they were getting continually more bent from my weakness.
How did I approach getting diagnosed with a disease with such a poor prognosis? I tried to stay as positive as I could and keep my life as normal as possible. I continued to work full time, until July of 2007, when my hand and finger weakness made writing and typing too difficult for me to continue working. In the first year after my diagnosis, my wife and I traveled more than we ever had while I was still able to walk. We went skiing two times and went on two cruises.
Adjusting to not working full time was very difficult for me as I was always very busy. I had an aide at home with me to help me with all of my daily activities. I have continued to volunteer in the Residency Program where I used to work. Unfortunately, over the last four years, my ALS has continued to progress in all aspects. All of my muscles have gotten much weaker. I am now no longer able to transfer out of my wheelchair on my own and I use a motorized ceiling lift for all of my transfers. The area where my decline has affected me the most is in my speech. My speech has gotten progressively slower and much more slurred. People who know me very well can still understand me, but people that do not know me have a very difficult time understanding anything that I say. This is especially a problem when I try to talk on the telephone. I have had an augmentative communication computer for the last two years. The computer will talk for me. More importantly, it has been the way that I have accessed the internet, including my email, since my hands are too weak to use a mouse anymore. The computer also lets me change the channels on my TVs.
As soon as I was diagnosed with ALS, I sought out research trials to enter. In 2006, I was in a trial in Kansas City with a new oral medication. That trial was only a phase 2, or a safety trial, not one to see if the drug actually works. That drug proved to be safe, but it has not yet entered trials to see if it actually works. Since the end of 2006, I have been in a trial at Washington University in St. Louis where I work, with an IV medication. Initially, the trial was only a safety trial and the drug proved to be safe. For the last two years, it has entered a phase 3 portion, or, an efficacy portion to see if the drug actually benefits patients with ALS. The trial requires 600 patients to be in it for one year. So far, they have 500 patients enrolled. The trial has been hard to get patients into because the drug is administered intravenously which requires every patient to have a permanent central line. That has not been easy for many patients to deal with and that has limited patient enrollment in the trial.
There are two agencies that support ALS. They are the Muscular Dystrophy Association and the ALS Association. Most of you probably know about the MDA from the annual telethon, but the organization also raises money for many other neuromuscular diseases, including ALS. The MDA also supplies patients with grant money to pay for equipment. The ALS Association has multiple regional chapters, including one in St. Louis. Both the MDA and the ALS Associations have loan closets that they let patients borrow equipment from. I have borrowed equipment from both associations at home and when I have traveled out of town, which has been very helpful. The ALS Association has multiple fundraisers, but their biggest one is the Walk to Defeat ALS, which is held annually at different times across the country. This is the 11th year for the Walk. My family, friends and I just participated in the St. Louis Walk yesterday. My Aunt Susan and Uncle Craig have never been able to come to St. Louis for the Walk, but have always raised money on my behalf. My team has always come in second in fundraising for the St. Louis Walk. Over the last five years, we have annually raised about $20,000 and have raised a total of about $100,000. I greatly appreciate Susan and Craig for holding this fundraiser on behalf of this year’s Walk. Any contributions that anyone can make toward this year’s Walk and my continuing fight against this terrible disease are greatly appreciated.
Any Donations may be paid directly to ALS Association and sent directly to:
Jason Goldfeder
16 Robindale Drive
St. Louis, MO 63124
We'll see ya at ROM on 7-11-11 for our Carolyn Waters Feature
Always, Neal :)))
