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Mike S.

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International Myeloma Foundation
June 24, 2011

It has been my honor to act as a member of the Board of Directors of the International Myeloma Foundation for most of the past 20 years.

In that time, it has evolved from a small, underfunded organization to become a primary source of current information and knowledge about myeloma and its management for tens of thousands of myeloma patients and clinicians all around the world -- from New York and Los Angeles to Beijing and Aukland.

The Great!

I've personally experienced the results of this organization in...

My conversations with myeloma patients and their family members, the specialist myeloma community, the cancer research community, and the commercial developers of new treatments of myeloma.

Ways to make it better...

If I had to make changes to this organization, I would...

Like to be able to grow the funds available to the IMF for investment in awareness about myeloma and translational research activities that might lead to a cure.

MY ROLE:
Board Member & Helped the staff to design, build, and develop the programs that the IMF provides in the USA and worldwide. .

Prostate Cancer International
June 23, 2011

Prostate Cancer International is a small but active non-profit, founded in 2008, that is primary focused on ensuring that men in general as well as newly diagnosed and long-term prostate cancer patients in America and around the world have access to helpful, current information about the diagnosis and management of one of the most common forms of cancer.

At present our primary activities are on line. We provide a daily news service (The "New" Prostate Cancer InfoLink; see http://prostatecancerinfolink.net), a social network for patients and others to share information (see http://prostatecancerinfolink.ning.com), and we have other longer term goals that will need funding and work.

In addition, Prostate Cancer International is a member of the Prostate Cancer Roundtable (see http://prostatecancerroundtable.net).

The Great!

I've personally experienced the results of this organization in...

Being able to see the growth in the usage of our web sites over the past 3 years. The "New" Prostate Cancer InfoLink now receives an average of 2,000 unique page visits every day of the year. Over 2,750 men and women belong to our social network.

Ways to make it better...

If I had to make changes to this organization, I would...

Need to generate a lot more money to be able to implement even some of the ideas we have in mind!

MY ROLE:
Board Member & Helped to found and manage day-to-day operations of organization.

Prostate Cancer International
June 23, 2011

Prostate Cancer International is a small but active non-profit, founded in 2008, that is primary focused on ensuring that men in general as well as newly diagnosed and long-term prostate cancer patients in America and around the world have access to helpful, current information about the diagnosis and management of one of the most common forms of cancer.

At present our primary activities are on line. We provide a daily news service (The "New" Prostate Cancer InfoLink; see http://prostatecancerinfolink.net), a social network for patients and others to share information (see http://prostatecancerinfolink.ning.com), and we have other longer term goals that will need funding and work.

In addition, Prostate Cancer International is a member of the Prostate Cancer Roundtable (see http://prostatecancerroundtable.net).

The Great!

I've personally experienced the results of this organization in...

Being able to see the growth in the usage of our web sites over the past 3 years. The "New" Prostate Cancer InfoLink now receives an average of 2,000 unique page visits every day of the year. Over 2,750 men and women belong to our social network

Ways to make it better...

If I had to make changes to this organization, I would...

Need to generate a lot more money to be able to implement even some of the ideas we have in mind!

MY ROLE:
Board Member & Helped to found the organization and to run it on a day to day basis.

National Organization for Rare Disorders, Inc.
June 23, 2011

I am a new Board member of NORD who is absolutely focused on ensuring that NORD ensures its relevance and importance to the patient community and the patient organizations that it serves.

NORD knows that it needs to do more than be the protector of the Orphan Drug Act. It has a new leadership team, and that leadership team has recently developed a new set of advocacy principles that we believe reflect the needs of patients with rare diseases. These include:

-- A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
-- A nation where people with rare diseases can secure access to diagnostics and therapies that extend and improve their lives.
-- A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create diagnostic tests and therapies for all rare disorders.
-- A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases.

There is a GREAT deal more that we need to do ... and I look forward to helping the leadership and the staff of NORD to make sure we succeed in achieving these new goals.

The Great!

I've personally experienced the results of this organization in...

The stature that NORD holds among other Board members of NORD and staff at organizations like the U.S. Food & Drug Administration and EURORDIS (NORD's European partner organization).

Ways to make it better...

If I had to make changes to this organization, I would...

I have a list that is too long to post. What I would like to do is be judged as a Board member on what I can help NORD to accomplish over the next 5 years.

MY ROLE:
Board Member & So far ... I only helped to re-write the new advocacy objectives mentioned above and think about ways to accomplish these..

International Myeloma Foundation
June 23, 2011

It has been my honor to act as a member of the Board of Directors of the International Myeloma Foundation for most of the past 20 years.

In that time, it has evolved from a small, underfunded organization to become a primary source of current information and knowledge about myeloma and its management for tens of thousands of myeloma patients and clinicians all around the world -- from New York and Los Angeles to Beijing and Aukland.

The Great!

I've personally experienced the results of this organization in...

My conversations with myeloma patients and their family members, the specialist myeloma community, the cancer research community, and the commercial developers of new treatments of myeloma.

Ways to make it better...

If I had to make changes to this organization, I would...

Like to be able to grow the funds available to the IMF for investment in awareness about myeloma and translational research activities that might lead to a cure.

MY ROLE:
Board Member & Helped the staff to design, build, and develop the programs that the IMF provides in the USA and worldwide.