Do you think about getting involved in your community but have concerns that it may take too much time?

Do you have a few hours in the next couple of months to volunteer and give back?

Do you have type 1 diabetes or does your child, grand child, spouse, partner, parent, sibling, friend, neighbor or even your co-worker live with type 1 diabetes?

Do you live in the East Bay in Oakland, Berkeley, Albany, Castro Valley, Alameda, San Leandro, Hayward, Fremont, Newark, Union City, El Cerrito, Concord, Walnut Creek, Fairfield, Livermore, Antioch, Richmond, Pittsburg, Vallejo, Vacaville and Martinez?  What about in the northern counties of Del Norte, Humboldt, Lake, Mendocino, Napa or Sonoma? Do you live in South San Francisco, Pacifica, San Mateo, Los Gatos, Milpitas, Cupertino, Santa Clara, Campbell and San Jose or in the counties of San Benito, Monterey and Santa Cruz?

Can you imagine what you’d say to a legislator if given the opportunity?  Or do you already rant and rave, roll your eye, smile or feel pleased at your federal legislators actions while watching the evening news or reading the paper?

If you answered yes to these questions, you are URGENTLY needed as volunteer JDRF advocate.

As a JDRF Advocate you may infrequently be asked to send an email or maybe to write a letter (remember that?) to a federal legislator in support of diabetes research funding.  Occasionally one may be asked to encourage others to volunteer in advocacy.  If you are fortunate you may be asked to make a personal visit to a legislator in his/her district office. To have the opportunity to visit a federal legislator in his/her Washington office is an experience not soon forgotten.  There is something about the Hill, the Capital and our government in action that is impressive regardless of political affiliation.

Every other year JDRF makes a coordinated effort to schedule and complete meetings between our representatives and senators and their constituents in their local districts. JDRF calls constituents JDRF Advocates and JDRF calls this coordinated effort the Promise Campaign.  JDRF Advocates tell their story about diabetes and ask the legislator to “promise to remember you” when making decisions about diabetes. The objective in the Promise Campaign is to meet with each Congressional leader within our chapter territory.  The momentum continues the following year with Children’s Congress building on messaging established in legislative visits the preceding year. Two campaigns that work together to influence lawmakers to vote yes when next issues important to diabetes arise.

We ask advocates to arrange meetings with legislators.  This can be done from your home or office during normal business hours.  Do you have time to arrange a meeting?

Then we assemble a small group of advocates including advocate families for the actual meeting. We can also provide one-on-one training sessions, if needed, that will fit around your schedule. In preparation, advocates are asked to review key message points. The meetings take less than an hour but lawmakers

JDRF Advocates meeting with Representative George Miller

hear first hand about living with type 1 diabetes. Finally, you are asked to take a photo or send a note to the legislator and thank him/her for the meeting.  How much time does it take to prepare, attend and follow up from a meeting?  Maybe two or three hours?

JDRF notes the impact of these meetings; when legislators are making public statements in Washington on issues of interest to people with type 1 diabetes, they often mention meetings advocates during the Promise Campaign.  There is a lot that impresses me about JDRF but JDRF Government Relations impresses me more than everything else. They use progressive approaches in communicating with advocates and they make it easy for people to volunteer small amounts of time.  Additionally, they work really hard to ensure the special congressional funding of diabetes research that exceeds even the $100,000,000 funding of diabetes research funding JDRF funds through your generosity.

I am a JDRF Advocate but only Nancy Pelosi is interested in hearing from me.  I live in San Francisco and legislators representing other areas want to hear from people they represent or within their voting district.  Think you are ready to sign up to be a JDRF Advocate?

JDRF Bay Area is about half way through the 2009-2010 Promise Campaign and advocates have already completed many legislator visits.  We need people willing to volunteer as advocates to help organize meetings with representatives that live in the districts listed below.  Nine meeting is all we need to complete by May.  Once completed you decide if you have had enough or if you wish to continue as a JDRF advocate.  My guess is that most people who try it will want to continue.

• District 1 – Rep Michael Thompson (Del Norte, Humboldt, Lake, and Mendocino counties and parts of Napa and Sonoma counties)
• District 7 – Rep. George Miller (Richmond, Pittsburg, Vallejo, Vacaville, Martinez)
• District 9 – Rep. Barbara Lee (Oakland, Berkeley, Albany, Castro Valley)
• District 10 – Rep. Garamendi (El Cerrito, Concord, Walnut Creek, Fairfield, Livermore, Antioch)
• District 12 – Rep. Jackie Speier (San Mateo, South SF, Pacifica)
• District 13 – Rep. Fortney Stark (Alameda, San Leandro, Hayward, Fremont, Newark, Union Cty)
• District 15 – Rep. Mike Honda (Los Gatos, Milpitas, Cupertino, Santa Clara, Campbell)
• District 16 – Rep. Zoe Lofgren (San Jose)
• District 17 – Rep. Sam Farr (all of San Benito and Monterey County, part of Santa Cruz County)

Nine meetings is all we need to complete in the next five months.  It sounds easy but we need volunteers willing to help for a few hours.  Once completed you decide if you have had enough of volunteering or instead you wish to continue as a JDRF Advocate.  If you can help or need more information, please contact Carolyn Eisen (415) 597-6317 or me by commenting on this blog.

On behalf of the 75,000 people living with type 1 diabetes in the Bay Area, thank you.

See photos from JDRF Advocates around the country meeting with their representatives.

Last night a small but industrious group of JDRF volunteers and JDRF staff gathered for holiday cheer and to trim a 16 foot tree at Davies Symphony Hall.   JDRF has been provided with the tree as part of the Symphony’s Community Deck the Hall program.  Davies Symphony Hall will be transformed into an evergreen wonderland with towering trees, uniquely decorated by local schools, community groups and charities.  This is JDRF’s second year in the Deck the Hall program.

JDRF tree in progress

Vickie Mallon and Carolyn Eisen coordinated the decorations for the JDRF tree.  Our tree would be decorated in silver and blue coordinating nicely with JDRF colors.  Everyone in the office pitched in this week to make the decorations so we were ready to decorate as everyone arrived last night.

Our tree trimming volunteers included:  Priscilla & Byron Essert; Larry & Margaret Lum; Bill & Heather Marks; Connie, Nick & Mei Mei McComb & their dog, Colton; Mara Bonelli and Rachel Rosenfeld.  Tree trimming staff included Carolyn Eisen, Caroline Kinsey and me.  Not a big group but we got the job done in about 90 minutes.  We listened to holiday music, laughed a lot, and enjoyed wonderful food, sodas and wine all provided compliments of Roche — which was very much appreciated.  Thanks, Jennifer McFarland!

The thing about a 16 foot tree is that all 16 feet must be decorated or it just looks silly.  This requires a 16 foot ladder which was provided by the symphony.  It also requires that someone climb the ladder to hang the decorations.

Byron Essert was first up the ladder.

Byron was the first to take a turn on the a ladder.  Without anyone else willing to climb the big ladder, Priscilla ventured up the ladder and settled in at her personal comfort level.  Priscilla managed to get most of the tree decorated.  Nice work Priscilla!

Then it was my turn.  I argued that I had my turn last year.  It does no good.  I start to climb and then I climb higher and slowly I find myself closer to the top than I care to remember.  Sixteen feet is really high when on a ladder.  And a wobbly ladder at that.

Holding the Ladder

I think we hung our crowning star on a branch at about 15 feet. No way am I going any higher on a ladder.  No Way I can make it to the top of 16 foot tree!

At the end of the evening, we admire our tree and we think the tree looks beautiful complete with a foil tree skirt.  We hung blue ribbons, silver and blue ornaments of large and small sizes and blue wreaths.  For splash of color, we included a few JDRF Walk to Cure Diabetes Sneakers. Best of all, the tree features 50 silver stars with 50 unique photographs of local children affixed to the star’s center and the date the child was diagnosed with type 1 diabetes.

Colton

The San Francisco Symphony’s annual Deck the Hall event, on December 6th, celebrates the holiday season with a magical stage show designed for children and it is the first time the public will see the decorated trees.

The concert includes performances by the Orchestra, dancers from San Francisco Ballet School, the San Francisco Boys Chorus, Chhandam Youth Dance Co., and Stephen Saxon and the New Klezmorim.  The post-show party in the lobbies includes entertainment, arts and craft activities and refreshments.

Margaret decorating

These concerts are presented in conjunction with San Francisco Arts Commission.  It is estimated that 40,000 concert-goers will view the trees during the month of December.

This means that 40,000 people may see the JDRF tree which helps to raise awareness of type 1 diabetes and to keep diabetes firmly in the public spotlight.

Decorators until the end

And we had a great time. So if you have a chance to stop by Davies Symphony Hall (201 Van Ness Avenue) check out the JDRF tree on the 1st Tier.  Let us know what you think by responding to this message.  Don’t forget to check for the the star 15 feet up, front and center.

So now we have the holiday spirit and we raised awareness of type 1 diabetes.  What about you?  What are your plans for the holidays this year? If you have been able to raise diabetes awareness, we would love to hear about it.

Just in case you don’t get a chance to see the JDRF tree, you can view it now.  Happy Holidays.

The JDRF Tree at Symphony Hall

In the US, we are starting the “Walking Season” when JDRF asks us to walk to raise money for cure. So I’d like to do my part, by reminding you all how important JDRF is to the human trials of potential cures for type-1 diabetes, which I track on my blog here.

Let me give you the punch line up front: 69% of the treatments currently in human trials have been funded by JDRF. (And the number is 86% for the later phase trials!) This is an amazing impact; one that any non-profit should be proud of.

Cures in Phase-III Human Trials
Summary: there are 4, and all of the treatments have been funded by JDRF.

* GAD65 (several different studies)
* TolerRx’s CD3 (several different studies)
* MacroGenics’s CD3 (several different studies)
* DiaPep227

Cures in Phase-II Human Trials
Summary: there are 10, and 8 of them have been funded by JDRF, either directly or indirectly through ITN. Here are the treatments that have been funded by JDRF:

* MMF/DZG by Skyler
* PROCHYMAL by Osiris Therapeutics
* Rituximab by Pescovitz at Indiana
* Thymoglobulin (also known as ATG) by Gitelman
* Abatacept by Orban at Joslin Diabetes Center
* Umbilical Cord Blood Infusion by Haller at University of Florida
* Exsulin (previously INGAP) by Exsulin
* Kineret / Anakinra by Mandrup-Poulsen at Steno Diabetes Center

Not funded by JDRF:

* Atorvastatin (Lipitor) by Willi at Children’s Hospital of Philadelphia
* Brod at University of Texas-Health Science Center

Cures in Phase-I Human Trials
Summary: there are 12, and 6 of the are funded by JDRF and 6 are not. Here is the list funded by JDRF:

* BHT 3021 by Bayhill Theraputics
* Trucco at Children’s Hospital of Pittsburgh
* IBC-VS01 by Orban at Joslin Diabetes Center
* CGSF by Haller at University of Florida [*]
* Proleukin and Rapamune by Greenbaum at Benaroya Research Institute
* Lisofylline by DiaKine

Not funded by JDRF:

* ATG and autotransplant by Burt at University of Sao Paulo
* Diabecell by Living Cell Technologies
* NI-0401 by NovImmune
* Etanercept (ENBREL) by Quattrin at University at Buffalo School of Medicine
* CGSF and autotransplant by Esmatjes at Hospital Clinic of Barcelona [*]
* Pioglitazone by Wilson at Stony Brook [*]

The studies marked with a [*] are ones which I have not yet blogged about, but hope to in the next few weeks, as I work through my backlog. This summary does not include Artificial Pancreas research, which I will discuss more in a future posting.

Summary of all Trials
26 in total
8 not funded by JDRF
So 68% of the human trials currently underway are funded (either directly or indirectly) by JDRF. Everyone who donates to JDRF should be proud of this huge impact; and everyone who works for JDRF or volunteers for it, should be doubly proud.

It is important to remember, however, that although there are four treatments in Phase-III trials, we are not close to a cure for established type-1 diabetes. All of the clinical trials in Phase-III and Phase-II are targeted at honeymoon type-1 diabetes; none at established cases. Even with that restriction. None of the treatments in Phase-III trials resulted in cures during their Phase-II trials. They all extended or increased the honeymoon phase in some way.

We have a long way to go, and that is where JDRF comes in.

Compared to Last Year

In 2008 there were 3 treatments in Phase-III trials, in 2009 there are 4 (growth of 33%).
In 2008 there were 5 treatments in Phase-II trials, in 2009 there are 10 (growth of 100%).
In 2008 there were 10 treatments in Phase-I trials, in 2009 there are 12 (growth of 20%).

I do think that a little of this “growth” is because I have gotten better at finding clinical trials, so last year I missed some trials which I’m not missing this year. But I also think that most of the growth is real. There really are more clinical trials going on now.

Discussion

* I give an organization credit for funding a cure if it funded that cure at any point in it’s development cycle.
* I use the term “US Gov” for all the different branches and organizations within the United States of America’s federal govenment (so includes NIDDK, NIAID, NICHD, etc.)
* The ITN (Immune Tolerance Network) has JDRF as a major funder, so I count ITN as indirect JDRF funding.
* I have made no attempt to find out how much funding different organizations gave to different research. This would be next to impossible for long research programs, anyway.
* Funding of research is not my primary interest, so I don’t spend a lot of time tracking down details in this area. I might be wrong on details.
* I don’t work for the US Gov, JDRF, or any of the other organizations discussed here. I’m not a member of JDRF or any of the other organizations discussed here. I do own stock in several of the companies discussed here.

This is an update and extension to a blog posting I made last year:

http://cureresearch4type1diabetes.blogspot.com/2008/10/jdrf-funding-of-cure-research-phases-ii.html

Joshua Levy