Category Archives: non-profit

Best Buddies Miami

Posted on by
Reply

We took the kids with us and spent this past weekend in Miami where we attended the Best Buddies Miami gala.  Best Buddies (www.bestbuddies.org) is an organization that helps people with intellectual and developmental disabilities by providing them opportunities for friendship, employment assistance, and leadership training.  We’ve been involved with the organization since 1994, and it remains one of our favorite charities because of the tremendous work it does to assist one of the most marginalized groups in our country and in the world.

The Miami gala is one of our favorite events every year, partially because there are very few cities that have better people-watching than Miami.  This year’s gala did not disappoint.  It was held at Marlins Stadium ($350 million of public funding at work!), and Far East Movement performed.  (I have to digress here and mention that the parents of the Asian musicians in this band must be so proud.  It’s just what every immigrant parent dreams their child will grow up and be—a hiphop star.)  And rather than describe the many outfits that left very little to the imagination, you will just have to take my word for it.

We stayed at the Fontainebleau, and this was the view from our hotel balcony.

view from the Fontainebleau

We did manage to spend a few hours by the pool and by the ocean, after homework was done, of course.  It was sunny and in the mid-70s in Miami, as perfect weather as it could be.  Great cause, great event, great weather, and a wonderful time had by all.  It doesn’t get much better than that!

Epilepsy Therapy Project board meeting

Posted on by
Reply

We attended an Epilepsy Therapy Project board meeting this past weekend in Los Angeles.  Naturally, on the way to the hotel after landing in LA, we stopped for a late lunch at this restaurant:

In-N-Out burgers

Next to Shake Shack, they have the best burgers around!  Not to mention that their fries are superior (but, then, I’m not a fan of crinkle fries).

The board meeting was very productive.  Faculty from UCLA who were working on various issues relating to epilepsy gave presentations on their research and clinical findings.  Some real progress is being made, although we have a long ways to go, especially in getting potential new therapies out of the lab and into clinical trials and then to patients.  The costs of clinical trials are prohibitive (in the millions of dollars) and the FDA is slow to approve new treatments.  It can all be immensely frustrating for families who are desperate to have their loved ones’ seizures controlled with minimal side effects.

The most heartrending presentation I saw was a video on infantile spasms where a 16 year old girl is crying desperately for her mother as she suffers a bout of seizures.  It was extremely difficult to watch.

Folks from the Epilepsy Foundation also joined us at the board meeting, as we are discussing a broader and deeper partnership with the Epilepsy Foundation that can further the research priorities of ETP and combine them with the support and advocacy functions at which the Epilepsy Foundation excels.

We also went on a SUDEP awareness walk (you can see the group gathered here):

ETP

SUDEP stands for Sudden Unexplained Death in Epilepsy.  No one quite knows what happens, but some patients who suffer from epilepsy die suddenly with no obvious explanation.  It’s not a well-understood or well-communicated phenomenon, and it is heartbreaking for the families, many of whom were never informed of this possibility.

One of the things that I have learned to do better from my time on the board at ETP is to put things in perspective.  I cannot imagine the strength it takes for these families to cope with their loved ones’ seizures and the aftermath.  It’s why ETP is so important to me, with its mission of getting more therapies to those suffering from epilepsy.

 

US-Japan Leadership Program Executive Committee Meeting

Posted on by
Reply

After attending the Epilepsy Pipeline conference for a day, I flew to Honolulu to attend the annual US-Japan Leadership Program Executive Committee meeting.  Honolulu was, as it always seems to be, beautiful–80 degrees and sunny.  The meeting was an extremely productive meeting.  We have some marvelous Fellows-in-the-making for this year.  And the energy at the meeting was a wonderful thing because it meant that people were passionate about the program and want it to succeed.

And, in the end, is there any significant downside when the meeting is in Hawaii?  (Other than missing the Super Bowl when flying back on Sunday, that is.)  Here is a shot of Diamondhead at sunrise to illustrate.

Diamondhead at sunrise

Epilepsy Pipeline Conference

Posted on by
Reply

I attended the 2012 Epilepsy Pipeline Conference in San Francisco held February 2-4 and sponsored by the Epilepsy Therapy Project.  It’s a conference attended by venture capitalists, epileptologists and other medical professionals, and business people, all of whom are interested in new developments and research in the world of epilepsy.  There were presentations about the latest drugs and devices in the pipeline.  (Although who knows if the FDA will approve any of them, but that’s a topic of discussion for another time.)  For the first time, we also held a “Shark Tank”-type competition where six different folks pitched their ideas to the audience and a panel of experts for a $50,000 grant.  Each person had 3 minutes to make their pitch and then another 7 minutes of questions from the panel and the audience.  Each panelist voted for their favorite applicant, and the audience texted in their votes, and the audience winner was awarded 2 votes.  The grant was awarded to Charles Anderson for a seizure detector iPhone app.  All of the presentations were terrific, but I think those who voted for Charles Anderson felt that the $50,000 grant would have the most impact on the development of his invention.  (Plus, the app will be very cool!)

It was also really lovely to see some folks that I haven’t seen in a while.  Amongst others, my best friend from high school (we’ve been friends since 4th grade) was also there, as she is an epileptologist in Denver at the Children’s Hospital there.  We made sure we grabbed a meal in Chinatown, at Henry’s Hunan Restaurant and had dinner together as well, as we caught up on what was going on in each other’s lives.

Then, it was off to Hawaii for another conference, but that’s a subject of another blog post.

Institute for Justice

Posted on by
Reply

The Institute for Justice was formed in 1991 and is the only libertarian public interest law firm in the country.  The organization engages in litigation on behalf of those individuals whose most basic rights—the right to earn a leaving, the right to own property, and the right to free speech—are denied by the government.  IJ’s mission is to advance the rule of law under which individuals can control their destinies as free and responsible members of society.

Jim has been on the board of IJ for over 15 years, and we have gotten to know the organization and the lawyers and staff who make up the organization very well during that time.  I can’t tell you how impressed I am by the people of IJ.  These are folks who could make ten times what they make at IJ at a law firm, but they are willing to make the economic sacrifice in defense of individuals who suffer from the denial of their individual rights and liberties by federal, state, or local governments.  IJ’s lawyers and staff are tremendously talented individuals who engage in cutting edge litigation for individual liberties and have a surprisingly fun time doing it.

Given the economic volatility in recent years, it has become increasingly important to ensure that the government doesn’t stifle free enterprise and free speech in an attempt to regulate its way out of the economic doldrums.  IJ stands at the vanguard of those who protect these very American rights to the benefit of all who live in this country.  You can find out more at www.ij.org.

YMCA – Fairfax County

Posted on by
Reply

The YMCA – Fairfax County is part of the metropolitan DC area set of YMCAs.  Its mission is to build strong kids, strong families, and strong communities.  While Fairfax County one of the most affluent counties in Virginia, the resulting high cost of living makes it difficult for those of more modest incomes to make ends meet.  The working poor are particularly hard hit—those who make enough not to qualify for financial assistance available for the poor but who do not make enough to afford the cost of living in Fairfax County.  In 2010, the Fairfax County branch gave more than $300,000 in financial scholarships to kids and their families, primarily for child care and summer camp.

I have been on the Board of YMCA – Fairfax County for almost 10 years.  What I like about the Y is that it is community based and reaches out to the local businesses and communities to make our region more welcoming and more livable for everyone.  I also like the emphasis on kids’ health.  The earlier you can teach a child about the benefits of healthy eating and regular exercise, the better off that child is for the rest of his/her life.  And the working poor are too often neglected.  These are families who are doing all the right things, often holding down multiple jobs, to try and carve a better life out for their children.  The safety net is not set up to help families like these, and the Y is an organization that can step in and ease the burden.  You can find out more about the Y at www.ymcadc.org (click on “Locations” and then “Fairfax County Reston” to find out more about this particular branch).

US-Japan Leadership Program

Posted on by
Reply

The US-Japan Leadership Program is a cross-cultural program for young leaders (defined as 28-42 years old) where 20 Japanese and 20 Americans spend a week together, alternating between Seattle and Japan, learning about each other’s culture.  The hope is that the bonds of friendship forged over the 2 weeks (each delegate commits to both the Seattle and the Japan weeks) will come in handy in the event that official channels of communication ever break down.  And, of course, the hope is that official channels never break down if there are leaders in both countries with experience and understanding of the other country’s culture and thinking.  I have been co-chair of the USJLP executive committee and am currently co-chair of the capital campaign.

This has been an interesting program for me.  As someone whose family on both sides fled the Japanese invasion of China and suffered considerable hardship as a result of that invasion, there are cultural and historical difficulties in a relationship with the Japanese.  This is especially true when there are Japanese who deny the atrocities committed during their invasion and occupation of China.  (There are actually Japanese in the program who fall in that group.)  But, in the end, the Japanese in the program are overwhelmingly global in their approach and sophisticated in their thinking, and it has been a great opportunity for me to learn more about their mindset.  In addition, Japanese women, in particular, have great admiration and envy of American women who can successfully (relatively speaking) juggle marriage, children, and a career.  The vast majority of Japanese women give up their career upon marriage and certainly do so after having children.  Whatever the obstacles American women encounter with our juggling act of family and career, it is nothing compared to the struggles of Japanese women, and their outlook upon their own culture is refreshingly candid.  As I tell the Japanese women in the program, I look forward to their revolutionizing Japanese society in the coming years!  You can find out more at www.usjlp.org.

Children’s Chorus of Washington

Posted on by
Reply

The Children’s Chorus of Washington is a co-ed children’s chorus based in Washington, DC.  Its mission is to bring together children of different ages and backgrounds through song.  CCW has been nationally recognized for its program and artistic excellence.  It comprises 4 performing ensembles and has over 100 singers, representing over 90 public and private schools in the Washington, DC area.

Choral music is not a genre I have much experience with, but what impresses me about CCW is the passion and dedication the staff and choristers have in striving to give the best performance that they can.  It is also impressive to see these children, generally ranging in age from 9-18, from very diverse backgrounds finding common ground with each other and with their audiences through their music.

I am on the Board of Directors and Treasurer of CCW.  The organization has evolved tremendously in the past several years from a mom-and-pop choral arts organization to one that is more professional and polished than ever before.  At a time when people have committed many of their charitable dollars to organizations that can put food on the table of vulnerable families, it is all the more impressive that CCW has continued its tradition of artistic excellence and succeeded against considerable odds in building a strong foundation for the organization.  You can learn more about CCW at cchorus.homestead.com.

Epilepsy Therapy Project

Posted on by
Reply

The Epilepsy Therapy Project was founded in 2002 by 3 parents of children with epilepsy, and its mission is to accelerate ideas into therapies for people living with epilepsy and seizures.  About 1% of the population suffers from epilepsy and about 40% of that population cannot control their seizures with existing treatments.  Many others suffer from significant side effects with the drugs they are taking to control their seizures.  ETP is addressing the funding gap that exists between the development of promising ideas in the laboratory and the funding of clinical trials of successful therapies.  ETP provides not only financial assistance for researchers and startups with possible new treatments for epilepsy but, with the able assistance of its Scientific Advisory Board and Business Advisory Board, provides scientific and business advice to those organizations as well.

I was Executive Director of ETP for almost 3 years and am now on its Board of Directors.  I have an uncle who suffers from epilepsy, and the “cone of silence” that surrounds people suffering from epilepsy and their families makes the disease even more hurtful.

In today’s regulatory environment, it has become increasingly difficult to have any new therapies approved for any disease.  It is all the more important for organizations such as ETP to champion the continuing research for new and better treatments for those suffering from this debilitating disease.  See www.epilepsy.com and www.epilepsytherapyproject.org for more information.

Children’s Law Center

Posted on by
Reply

The Children’s Law Center is the largest legal services organization in the District of Columbia and the only one that represents children, our most vulnerable population.  CLC represents children and their families in guardian ad litem, custody, adoption, and foster parent cases.  In addition, it partners with Children’s National Medical Center to provide representation to children whose health is adversely affected by other factors in their environment (e.g. substandard housing, lack of special education assistance, etc.).  I serve on the Board of Directors and am also Treasurer for CLC.  What I find challenging about CLC is that there are so many more children in need of help than CLC can assist, even with innovative partnering relationships with law firms to provide pro bono attorneys.  What I find inspirational about CLC is the dedication of the staff to ensure the best possible outcome for the children and families whom CLC does help.  And to see a family turn its life and future around because it has finally gotten the support it needs, well, it doesn’t get much better than that.  To find out more, see www.childrenslawcenter.org.