Alignment around a cause is the most enduring and powerful level of alignment. As Steve McCurdy was telling me about the most recent Barth Syndrome Foundation (BSF) conference, the power of a compelling cause to make people put aside any petty jealousies and conflicts was clear. This permeates everything about BSF from its strategy and culture to organization and ecosystem and what they do.

Recall the five levels of alignment – from least to most enduring and powerful:

    1. Forced alignment based on environmental or situational factors.
    2. Implemented alignment – actual behaviors.
    3. Alignment by choice for either strategic or tactical reasons.
    4. Personal alignment based on relationships.
    5. Causal alignment based on shared values.

As I wrote in my earlier article, “Why The Five Levels Of Alignment Key Is Motivation,” causal alignment is based on a shared view of what matters and why. BSF is a shining example of this, punching way above its weight class based on three things.

  1. The power of the cause.
  2. The scarcity of resources.
  3. Other-focused leadership.

The Power of the Cause

Barth syndrome is a life-threatening genetic, multi-system disorder without a cure mostly affecting males. The cause is powerful because the condition is genetic, happening through no fault at all of anyone involved. It’s powerful because the impact is huge. It’s powerful because no single person or family has any hope of dealing with the disorder on their own. They need help.

Scarcity of Resources

The incidence of this syndrome is somewhere between 1 in 200,000 to 400,000 births. The BSF has identified 250 cases of Barth worldwide, but thinks there may be many more undiagnosed cases.

In any case, the population is too small to provide economic justification for one of the big drug companies to invest the resources required to develop a cure. Thus BSF has a lifeboat mentality, feeling like a small group up against overwhelming odds. They know they have to stick together.

Other Focused Leadership

The common thread from Steve and Kate McCurdy, two of the five cofounders, to Executive Director Emily Milligan to medical director Matthew Toth is a focus on helping others. No one gets involved with this organization at any level to fuel their own status. It’s all about mitigating and eliminating Barth-related suffering and loss of life.


Environment: BSF will play with anyone that can help mitigate and eliminate Barth-related suffering and loss of life. There are no geographic or social barriers of any type. BSF welcomes anyone in that wants to help in any way.

BSF core values are completely aligned with their mission and situation. They know they have to collaborate and learn from others. They have to respect contributors’ time and talents and be good stewards of the resources they are granted. They have to be credible, professional and compassionate with integrity and never give up or waiver from placing “the interests of all those affected by Barth syndrome above the interest of any individual.”

Attitude: Strategy is about the creation and allocation of resources to the right place in the right way at the right time. BSF focuses its scarce resources on:

  1. Expand science and medicine program to further encourage finding treatments or a cure.
  2. Enhancing BSF’s capacity.
  1. Build confidence and trust in BSF’s community and resources.

Relationships: BSF is extremely community and family-focused. They want to be the easiest and most welcoming organization for medical professionals to work with – including some scientists that see themselves as part of the community, working together, collaborating and sharing info in a way that is often uncommon among this competitive group, even bringing their entire families to the conference.

Behaviors: This is a culture of action. Certainly there’s a supportive element. But what matters most are meaningful education through publications and conferences, advances in treatment, and finding a cure by funding research and trials and encouraging trial participation – all of which this small community has moved forward materially.