Wednesday, November 18, 2015

The Jewish Ashram project vision (draft grant proposal)

2012 grant proposal republished here to inspire Joshua on his upcoming Bar Mitzvah and motivate other seekers interested in an Inspirational, Abundant and Blissful Jewish path

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Title of Project *
 

The Virtual Jewish Ashram (Phase One of The Jewish Ashram) 

Project Description

We believe that Judaism has an image problem. Yes, it's true. There are too many unfavorable beliefs about the Jewish people, Jewish study and Jewish history -- even among Jews about being Jewish. Like the famous joke about the meaning of Jewish holidays: "they tried to kill us, we survived, let's eat." Although entertaining, we would like to challenge these assumptions and ideas by creating a space of Judaism that is (sit down, please) INSPIRATIONAL. (Take a breath) ABUNDANT. (Drink a glass of water) BLISSFUL. 

We are thankful to those who have have opened the gates to this sort of practice. The Jewish Ashram will provide a home for them to more readily and collectively build on what they have done, and bring in other important voices with important teachings about topics such as gratitude, abundance, love, possibility, and other subjects which concern spiritual seekers and fill the pages of spiritual, self help and psychology books. We would like to expose the world to this side of Judaism, the Gan Eden side. We believe that creating a new and dynamic incubator for a Judaism emphasizing these things can effect healing in the world, for Jews, non-Jews, and Judaism.

First, by creating a website where Jewish scholars and rabbis could offer inspirational messages, stories and ideals with our user base. The Jewish people need to meet all the Dalai Lamas from our scriptures. All the sages who taught us how to live fully and abundantly. Many rabbis have access to these learnings, but they are not taught or emphasized in traditional Jewish studies programs or shuls. We are taught about the holidays (yes, yes, we know they tried to kill us). We are taught the 613 commandments (really? 613? why do the Catholics only get 7? Oy, the suffering...). We are taught parables from the torah (stories about slaughter, debauchery, incest, deceit, etc). 

We are not taught the Judaism which will guide us to burst open our hearts and fill our souls with song. This is the Judaism that we aim to teach in our virtual (and in the future, physical) ashram. We envision our ashram as an incubator and reference for inspirational Jewish spiritual creation from simple topics pertaining to daily living to more esoteric explorations regarding lifetime purpose, infinity and the unknown universe, and every subject in between. What if rather than beating us down, Judaism raised us to our highest heights?

We want to expose seekers with the side of Judaism that is masked in the world. The Judaism which elevates our hearts in prayer, meditation, poetry dance, movement and song. The Judaism which whispers to us to live the most fulfilled, loving lives. The Judaism which loses itself in bliss. The Judaism which witnesses peace in every corner of the globe, including in Israel. The Judaism which embodies infinite oneness with the universe. The Judaism which embraces all humans as one. The Judaism which manifests miracles and blessings throughout the world. That is the Judaism we are devout to. That is the Judaism we believe spiritual seekers will devour with greater appetite than their bubby's gefilte fish. That is the Judaism we want to spread in the online and eventually, physical worlds. 
 
In the future, we foresee a center which holds this inspirational Jewish experience and study 7 days a week, 24 hours a day. We envision a place where Judaism is taught to guide seekers in their spiritual development, whatever that means to them. For some, their spiritual progression may be through the realm of creativity. What can Judaism teach us about Creativity? For others, their expression will be through Service. How could Judaism inspire these seekers through the tales and lessons from its texts? For others, spirituality may come in the form of community. And so forth. We envision teaching classes at this center where each student will embody the values of Judaism and will be inspired and transformed to live in their most fulfilled nature. 

The Jewish Ashram aims to be a place where Judaism guides people's lives on every dimension. We hope that in our center, Jewish people learn about dreaming and dancing, praying and praising, loving and losing, giving and gratifying. We hope that this retreat center opens our hearts to Judaism and that Judaism beams its golden light into the souls of its people. A Judaism that moves us from a place of abundance, and is mindful about sending fear based messages that paralyze us. 

Although the project we envision is a physical space, which may require[s] millions of dollars to build, we would like to begin the process of gathering these Jewish teachings and spreading the word through the virtual universe. 

Intended Need * 

We intend to build a Jewish Ashram in California. We envision a retreat center where all Jewish denominations will teach, study and commune. More than anything, we envision a center where new Jewish liturgy and practice are fostered and expressed. The Jewish community too often works in silos. Chabbadnikim do not mingle with Reform Jews who do not mingle with Renewal and humanist Jews. We strive to create a center which is grounded in embodied Jewish spiritual practice: meditation, heart opening, and compassionate wisdom. We aim to bring teachers from every denomination of Judaism to teach retreats at the center. We imagine that every group will form the center in its own way, be it through new prayers, art, wisdom, books, dance, chant, etc. Regardless of what retreat a participant will select, they will have access to all spiritual teachings of Judaism. Once the center is established, we will create cross-denominational retreats that incubate new liturgy, prayers, and Jewish practices. We will share these practices with the global Jewish community through our virtual ashram.

Today, Jewish seekers can be found kneeling before Hindi rishis, yogis and gurus or meditating in Buddhist monasteries on mountaintops across Asia or praying to a myriad of other spiritual Gods, who resonate with their hearts. Many seekers do not have access to the Jewish teachings of the heart and so, seek teachings outside Judaism to fulfill their basic human needs: the expansion of hearts and souls, the seeking of purpose, and communal creation. There are infinite spiritual teachings and revelations in the Jewish texts and we aim to encourage rabbis and Jewish educators to expose seekers to the heart and soul wisdom of Jewish spiritual practice. The teachings exist. The teachers are ready. The students are yearning. We aim to create a space where all facets of spiritual Judaism can be woven into a magical tapestry of shared and blissful spiritual experience.

The Jewish community collects many statistics about issues concerning the longevity of the Jewish people. Issues of intermarriage, conversion, loss of affiliation with Israel, etc. which concern these community leaders and scholars. There is one issue which may not be easily measured, but we believe is the most urgent to consider: the importance of the Jewish neshama (soul). We believe that by teaching the Judaism which fosters the expansion of the soul, our culture will rejoice in jubilant celebration of its traditions, increasing engagement with the culture and decreasing the issues that these concerning statistics present.

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WORKING NOTES

Please identify which aspects of the criteria this project meets and why this project is uniquely suited to Reboot *
Have to ask about this....
 

Intended Audience *
Jewish (and non-Jewish) spiritual seekers of all ages Budget


Website development budget - $5000
Security based site because people will be sharing personal information Not sure how much detail they need. Will ask.


Outreach Plan
Social Media through Jewish organizations and the featured rabbis
Social media through non-Jewish spiritual communities (Buddhist, Hindu, Tao, Yoga, Meditation, Dance, Movement, Chant, etc....)
PR and media in Jewish and non-Jewish spiritual papers, journals and online sources Community games - 5 minutes of meditation, photo collage of an attribute or teaching, quotes / poems / songs, etc. new ritual corner


Evaluation Plan
Number of people who are active visitors on the site
Number of visitors who recommend the site to their communities
Feedback regarding impact of site from visitors
Development of preliminary funding plan [Funding raised] for physical ashram (not sure we should include this....) I'll ask.

Monday, November 16, 2015

FOR JOSHUA

FOR JOSHUA:

Hi favorite neph-dude.  I hope things are well and that you're feeling great about and increasingly ready for your big day.  By now you have hopefully navigated through the myriad of adult voices inputting into the substance of your drasch.  I am very much looking forward to hearing what YOU decide to say, and to benefit from whatever wisdom you uncover and share.  I hope my minor and intentionally non substantive input -- of one idea per paragraph, taking your time, remembering to breath, etc. -- proves to be of some help.  I trust you with the substance and remain happy and available if you'd like any help working through it.  But mostly i'm looking forward to what YOU have to say...from YOUR  heart, in YOUR voice!

I want to thank you for agreeing to read something I co-wrote with a friend a few years ago...she actually wrote the first draft after we decided what we wanted to say, which I then edited.  We used the attached version to apply for a grant.  We didn't get the grant and she got married and moved to Israel.  Which is great!  In fact its a great example of a key theme in the grant and something we've discussed from time to time, uncovering and renewing Jewish ways to manifest abundance.  I know that abundance is a teaching you have absorbed online from non-Jewish sources, which is terrific.  I'm hoping that the grant proposal will inspire you to let abundance cross your mind on your Bar Mitzvah day, and perhaps many a day in the future.  

You may recall seeing Reb Zalman a few years ago (shortly after the grant proposal was written) at a church where he received an honorary doctorate degree.  He capped his acceptance drasch that day with this teaching, not frequently voiced in Jewish circles, and sadly emphasized even less:  "Abundance is possible.  Abundance needs to be invited."  Zalman as you know had deep Jewish roots, was one of the founders of Jewish Renewal, a Sufi priest, a friend and spiritual brother of the Dalai Lama, and much more.  I hope your Bar Mitzvah opens you to experiencing and co-creating an expansive, hopeful, happy, alive, love based, blissful and big hearted Judaism, bearing in mind Zalman's gift of pointing us to embrace the joyful challenge of abundance.  To me, that is where spiritual life resides and Tikkun Olam begins.

I love you Joshua Lev Abrams Rubin.  Happy Bar Mitzvah very soon.  And an invitation to abundance, now and always.

Mark

11/16/2015


Josh, here's a link to the attachment.  http://marksrubin.blogspot.com/2015/11/the-jewish-ashram-project-vision-draft.html

Tuesday, March 26, 2013

Wednesday, April 11, 2012

The Tyranny of The Chairs: A Passover Reflection on Furniture
Bondage... and Liberation? 


Do you need the table and the chairs? The table yes; I’ll let you know
about the chairs after I know who’s coming. Later...so what about the
chairs? Oh, you may not even need the table? Later still...sure, we
can do the table a bunch of chairs whenever you want... Even later
still: chairs/schmairs...sure you can come get them anytime before
Pesach, just let me know when... Finally, OK, OK. Tomorrow is fine,
just let me know what time... But are you sure? They’re heavy, I can’t
really help, and you’re still recovering from an injury... And beyond
all that, the background noise of the momentarily unspeakable (perhaps
a 5th question): and then we have to take them back? And so it goes. 


 The wise child asks: can you envision for a moment a world of
abundance where everything is possible, a promised land where there
are every number of tables and chairs to meet the requirements of any
gathering with ease. With aging bodies resting rather than being
taxed? And stress replaced with the possibility of enjoyment?


 The wicked, mischievous child says: you can’t do that. What makes
you think it possible to not stay in your slave mentality forever?
Isn’t it part of who you are...this bringing of tables and chairs back
and forth, there and back, again and again? How dare you? But go ahead
and try. Amuse me.


 The simple child asks: don’t we just need one chair for each person?
That should be easy. I can bring my own chair as an example.


 As for the child who asks no questions, seemingly unable to
understand and meaningfully contribute to such deliberations -- or
perhaps wise enough to avoid jumping into the fray... To that child
you can say, we have a chair for you should you wish to join us at the
table, but as always you are welcome to sit in peace on the floor,
which we know brings you much happiness. (Are we jealous?) 


The tyranny of the chairs. One of dozens of tyrannies we subject
ourselves to in planning for a gathering celebrating liberation. (How
ironic.) One of hundreds of tyrannies, even thousands, that we may
subject ourselves to daily, knowingly or not. 


May we listen to the voices of our inner children, and let go of
burdens -- big and small -- that do not serve us and that we need not
carry. 


To expand upon the words of the author Paulo Coelho, may we be mindful
that in every moment we can step into fantasy, the abyss, or somewhere
in between. And in choosing where to step, may we be grateful that, as
taught by zen master Charlotte Joko Beck, we cannot avoid paradise, we
can only avoid seeing it. 


May we embrace the Passover teaching of being grateful for hard earned
“freedom from” and engaging fully in what that opens for us, “freedom
to.” 


As we open to and embody this newly discovered or rediscovered
“freedom to” -- freedom to visualize and create our own reality, our
own paradise -- may we find ourselves moving in grace away from fear
and gravitating increasingly towards love as our touchstone and guide 


And may this season’s blessings of liberation, transformation and
renewal ease our process of being in that knowing, connected and
joyful promised place, as often and a much as we can stand to be free.

Friday, February 3, 2012

KARAOKE PLAYLIST





MARK’S VERY KARAOKE AND

  SING-A-LONG BIRTHDAY
2-3-2012
INTRO
Cry Baby, Janis Joplin == go all in!!!  http://www.youtube.com/watch?v=JjD4eWEUgMM&feature=related
SHOW TUNES
Sit Down You’re Rocking the Boat: http://www.youtube.com/watch?v=o7kzsZreG0o
Supercalifragilisticexpialidocious, Mary Poppins: http://www.youtube.com/watch?v=OQ2uT34rgmo&feature=related
music of the night – phantom of the opera  http://www.youtube.com/watch?v=EPXPwRgV-NM&feature=related
Le Jazz Hot, Victor/Victoria, Julie Andrews http://www.youtube.com/watch?v=qsHVLaNsCSg or Glee version http://www.amazon.com/gp/product/B004722YWY
Bring Him Home, Les Miserables, https://www.youtube.com/watch?v=s-0MS72uHSQ&feature=related
I Dreamed a Dream, Les Miserables: http://www.youtube.com/watch?v=Aeo86iOS0QU
“CLASSICS”
What a Wonderful World, Louis Armstrong http://www.youtube.com/watch?v=A3yCcXgbKrE 
Man’s World -- James Brown, Josh Stone  http://www.youtube.com/watch?v=BTTYqEPAX70
Can’t Help Falling In Love With You, Elvis Presley  http://www.youtube.com/watch?v=cAWalYmC170
Sounds of Silence, Simon and Garfunkel  http://www.youtube.com/watch?v=BvsX03LOMhI&feature=fvst (or Ground Zero version  http://www.youtube.com/watch?v=3np0DMxXKzM)
Bridge Over Troubled Waters, S&G, Whitney Houston and Cece Winans version  http://www.youtube.com/watch?v=KGL099t8i2s&feature=related
You’ve Got A Friend, Carol King and James Taylor http://www.youtube.com/watch?v=sIMJBDj_JkE&feature=results_video&playnext=1&list=PL65FC9F32BAB40D2D (or Carol, Celine, Gloria and Shania version http://www.youtube.com/watch?v=GUw8zQQ-Auw)
Knockin on Heaven’s Door, Bob Dylan http://www.youtube.com/watch?v=GM28M0i11SU
Don’t worry be happy – Bobby Mcferrin  http://www.youtube.com/watch?v=XNa_YiAXguU
“VINTAGE POP”
Proud Mary, Tina Turner http://www.youtube.com/watch?v=GCCS5fixC70 (start at 2:00)
Unchained Melody, Bobby Hayfield http://www.youtube.com/watch?v=z3YKtOBGMTM
a change is gonna come, sam cooke  http://www.youtube.com/watch?v=j-X9JkM9Bgo
I heard it thru The grapevine http://www.youtube.com/watch?v=I1n7xv8BD7o
for all we know, donny hathaway  http://www.youtube.com/watch?v=CVUeNHG1IFs
baby baby – supremes, Julia Noones (jaaaaaaa) http://www.youtube.com/watch?v=-kBQ8DgkyFk&feature=related 
(Build me up) buttercup – Foundations, Julia noones (jaaaaaaa) http://www.youtube.com/watch?v=HeP1Klmk0ng
sunshine of my life – Stevie wonder  http://www.youtube.com/watch?v=T2xWAciTORg&feature=related
tears in heaven – eric Clapton - http://www.youtube.com/watch?v=fCx3M9L439k 
Man in the Mirror, Michael Jackson: http://www.youtube.com/watch?v=94bNVOLba5A
  
Father Figure, George Michael,  https://www.youtube.com/watch?v=82KP_jTXfIU
YMCA, Village People  http://www.youtube.com/watch?v=CS9OO0S5w2k or 
Once in a Lifetime, Talking Heads: http://www.youtube.com/watch?v=-io-kZKl_BI

Take Me to the River, Talking Heads: http://www.youtube.com/watch?v=anjT71N4PGM

Shower the People, James Taylor: http://www.youtube.com/watch?v=xWnjEMbFFME

more than words, Extreme http://www.youtube.com/watch?v=0R-FGchhwLw&feature=related  (see Eastern Influenced version below from Love Guru)
Nothing Compares To You, Sinead O’Connor http://www.youtube.com/watch?v=dTOpQS982aM
Time After Time, Cyndi Lauper http://www.youtube.com/watch?v=IWDaHj2NdSE
Bohemian Rhapsody / Radio Gaga, Queen http://www.youtube.com/watch?v=lDckgX3oU_w
Crazy Little Thing Called Love http://www.youtube.com/watch?v=zO6D_BAuYCI
somebody to love – Queen, glee version http://www.youtube.com/watch?v=8vQj4i4awhY&feature=related
NEWER KIDS ON THE BLOCK
Single Ladies (Put a ring on it), Beyonce  http://www.youtube.com/watch?v=SaTvQnqKT0I
Forget You- Cee Lo Green Clean Version  http://www.youtube.com/watch?v=4mTw7t8ndaw  (see Comedy/Commentary section below for "Bar'chu!" parody remix).
where is the love black eyed peas  https://www.youtube.com/watch?v=FotCW5OIFZc&feature=fvsr (or official video without lyrics) https://www.youtube.com/watch?v=WpYeekQkAdc&ob=av2e
Black Eyed Peas The Time (Dirty Bit): http://www.youtube.com/watch?v=6GLXxRsRins&feature=fvwrel

Moves Like Jagger, Maroon 5: http://www.youtube.com/watch?v=ZpIMzsnWcZQ

Waiting Outside The Lines, Greyson Chance http://www.youtube.com/watch?v=tTHcKVeK-M0
Please Don’t Go, Mike Posner  http://www.youtube.com/watch?v=HiCozgbXJyg
Nella Fantasia, Sung-Bong Choi,  http://www.youtube.com/watch?v=tZ46Ot4_lLo&feature=related (English translation at bottom of list.)
BEATLES


all my loving – beatles, jaaaaaaa http://www.youtube.com/watch?v=REL5R-Ls3oU





ALSO “EASTERN (or) INFLUENCED”
Deva Premal and Miten -There is so Much Magnificence  http://www.youtube.com/watch?v=Kr7Vm72lU8E&feature=related
In These Arms, A Song for All Beings-Jennifer Berezan  http://www.youtube.com/watch?v=DzPTHstpJ2I  (start 2:00_
chori chori gori se – the guru http://www.youtube.com/watch?v=uyJc_lKULos
more than words, love guru  http://youtu.be/DQ8QcJZawLY
(MORE) COMEDY/COMMENTARY -- ADULTS ONLY 
I Hold Your Hand In Mine, Tom Lehrer  http://www.youtube.com/watch?v=6npVZoke66s
High As F**k, Jon Lajoie  http://www.youtube.com/watch?v=DsNRpaHnj
I'm Jewish And You Know It - Official Parody to Sexy and I know it http://www.youtube.com/watch?v=gvjbLYXnQmE
Black and Jewish (Black and Yellow Parody) http://www.youtube.com/watch?v=1TXNU1nh4E4
"Bar'chu!" (I'm A Jew) -- Remix of Cee Lo Green's "Forget You"  http://www.youtube.com/watch?v=RMIrDDGZmuI
TWO FOR THE ROAD
The Places You’ll Go, Suess – burning man http://www.youtube.com/watch?v=ahv_1IS7SiE


_____________

Nella Fantasia 

In my fantasy I see a fair world,
Where everyone lives in peace and honesty.
I dream of a place to live that is always free,
Like a cloud that floats,
Full of humanity in the depths of the soul.

In my fantasy I see a bright world
Where each night there is less darkness.
I dream of spirits that are always free,
Like the cloud that floats.

In my fantasy exists a warm wind,
That breathes into the city, like a friend.
I dream of souls that are always free,
Like the cloud that floats,
Full of humanity in the depths of the soul.

Wednesday, September 7, 2011

The Diane Rehm Show submission: Mo Udall and Parkinsons advocacy



Ms. Rehm is headlining an awards dinner at the National Press Club on Wednesday, September 14, 2011, which will also include Wolf Blitzer and Elanor Clift.    http://www.parkinsonsaction.org/. 
 I'm writing to ask that she please raise the bar and challenge the host organization to broaden its agenda beyond just research to include social/living issues, including especially threats to the safety net of Social Security and Medicare which continue to surface in discussions on eliminating entitlement programs.
As background, here is a link to my blog post WOULD MO UDALL ATTEND PAN’s 2011 MORRIS K. UDALL AWARDS DINNER? (Not Without Reservations).  http://marksrubin.blogspot.com/2011/09/would-mo-udall-attend-pans-2011-morris.html.  
Mo Udall turned in a phrase what took me more than a decade of living with Parkinsons and taking a national leadership role in providing pro bono resources for people with PD to distill:  “No place could call itself a city -- a center of civilization -- if it did not provide for the education of its young people and the care of its sick and elderly.”   I hope that Ms. Rehm carries the spirit of that message to the awards dinner next week, so that "care" becomes part of the Parkinsons community's advocacy agenda, not just "cure."




Thursday, September 1, 2011

WOULD MO UDALL ATTEND PAN's 2011 MORRIS K. UDALL AWARDS DINNER?


WOULD MO UDALL ATTEND
 PAN's 2011 MORRIS K. UDALL AWARDS DINNER? 
(Not Without Reservations)

“No place could call itself a city -- a center of civilization -- if it did not provide for the education of its young people and the care of its sick and elderly.” Morris K. Udall
(“Politics and Morality: Where Leaders Fail,” New York, May 26, 1971)


The Mo Udall of my youth, long before Parkinsons was a blip on my family radar (and perhaps his), was an icon of compassionate American leadership. He was a big picture thinker, with the energy and skill necessary to bring both broad and targeted measures to the table and shepherd them successfully into law. He was a man on a mission, particularly when it came to legislation directly affecting the lives of people, especially of those in need, in the here and now.

One of Mo’s early and most significant triumphs culminated in the passage of what became Medicare, the medical care social safety net for not only the elderly, but also people with disabilities. He began helping develop and support Medicare legislation in the early 1960s, in his 1st of 14 terms terms in Congress.  (CONGRESSMAN'S REPORT, "Medicare"--The Battle of Madison Square Garden, June 1, 1962.)

Medicare was, of course, enacted as a component piece of the broader safety net, including the Social Security program. For Mo and many of his cohort group, sustaining and contributing to this safety net was not only among their proudest accomplishments, it was a measure of who we are as a country. He believed that “Federal welfare programs...[like] Social Security, the income tax, Medicare and (a century ago) free public education...have made America stronger and enriched even those who have been taxed the most. Like Portia's ‘quality of mercy’ they have enriched both ‘he who giveth and him who receiveth...’” ("Myths and Politics," North Carolina, April 20, 1966.) In his 1976 Presidential run, Mo’s position on Health Care was unmistakeable: "Why in America, with our immense wealth, should the poor get sicker and the sick get poorer? ...America is the only industrialized nation in the world which does not provide basic health service as a universal right. As President, I will make sure that we do." ( Mo Udall for President 1976 Campaign Brochure)

Here we are, a half century later. A moment when perhaps the hottest political issues in the country – health care reform, entitlement programs, dismantling of Social Security and Medicare, etc. – threaten to undo some of Mo Udall’s most valued programs and gut the potential to realize some of his cherished dreams. Would Mo come to an awards dinner in his name hosted by an organization that has essentially ignored those issues and by choice chosen to not engage in this debate? Not without reservations!

If Mo decided to attend this year’s attend the Parkinsons Action Network's 2011 Morris K. Udall Awards Dinner, my guess is he would take the opportunity to issue a strong challenge to the Parkinsons lobby to reevaluate its historical priorities and place advocacy to secure research dollars in proper context rather than dominate its agenda. Everybody wants to find a cure for Parkinsons (except perhaps for some with financial stakes in treatment) and no doubt Mo would still be proud of the Parkinson's Disease Research Act of 1997 that bears his name. Of course, as Mo is famous for saying, “If you can find something everyone agrees on, it's wrong.”

For research dollars to be the sole goal of the Parkinsons’ lobby, or even the primary goal at this moment in time, is ludicrous. And in my view, an affront to Mo’s legacy. If Mo was with us today, does anyone think he would be silent on the prospect of the elimination of Medicare and Social Security?  How might he reshape PAN's framing about The Federal Debt Ceiling Debate and Its Impact on Health Policy: We Need Your Voices -- which abstracts from all of those social issues so critical to our community??

Please ask PAN to take a stand on these major social issues that affect so many in the Parkinsons community. Mo might proudly note at his Awards Dinner that his Democratic has “been the party of the disadvantaged in our society,” as he did in his Keynote Address at the 1980 National Democratic Convention. But in the same breath, he would also comfort everyone with what PAN hopefully already knows: this need not be partisan. Many major health based organizations have offered, at the very least, core principles that need to be honored in any reform of America’s safety net.

PAN needs to get its head out of the Sinemet sand. Indeed, by sending the Parkinsons community to their representatives armed only with a pitch for research money, and no position on the major social issues confronting our community and country, PAN risks its credibility. PAN can and should do better, especially if it wants to truly be the “unified voice of the Parkinson’s community.”

For a more detailed account of the history, limitations and risks of PAN’s research-only (or at least research=dominated) agenda, see http://marksrubin.blogspot.com/2011/01/rethinking-parkinsons-advocacy.html

Please honor Mo Udall by pressing those doing Parkinsons advocacy to broaden their agenda. After all, Mo’s highest and broadest call in this arena was for “the care of the sick” not just “the cure.”

Mark Rubin
9/1/2001


5 Mark Rubin, J.D., developed the legal content on the National Parkinson Foundation’s website, after years of helping his mother and later himself and many others navigate legal issues confronted by people with Parkinson’s and their caregivers.  The chair of NPF’s 5th Annual Young Onset Parkinson’s Network Conference, and a health care law attorney for most of his 25 years of law firm and then in-house legal practice, Mark has spoken frequently across the country on numerous health care law issues, including at programs focusing on Parkinson’s disease.  After being diagnosed with Parkinson’s near the end of the Millennium, Mark continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards short of a full deck.