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Discerning Consumers - Part 2:
Assessing Value and Impact for Your Donation

I continue our Discerning Consumer series with this article detailing how to assess and measure the effective and lasting impact organizations provide to donors and the public.  Why is impact important? Most of us have a finite amount of money to donate and give a “vote of confidence” to organizations which partner best with us along our journey with a progressive disease or syndrome or as a supportive friend or family member. It’s important to get the “biggest bang for your buck” because with many diseases having progressive issues you are potentially in a long-term relationship with the organization one chooses to support.

In the early stages of a disease diagnosis, an individual and/or their family members are typically running on pure adrenaline to get the best care, find THE BEST doctor, educate themselves on their disease etc. This article will hopefully give the reader pause to examine their giving styles and needs and to see in black and white what resources are out there and what each organization provides.

Your donation is an investment in the mission and IS a “vote of confidence” in the vision for how the mission is carried out. Your donation also creates impact like a pebble in a pond creates a ripple…you create momentum for the next person who will travel the same medical road you are on until a cure is found! Let’s face it, a donation is often fueled by a desire to give back for fears eased, tears ceased or hope imbued. A donor wants to know their gift counts and will make an impact. 

The Sturge-Weber Foundation’s motto is “for a reason, a season, or a lifetime”. People learn about the SWF for a reason. Some come, take what they need and leave or are led to another resource for their immediate need but often return as the SWS progression evolves over the ages. Some people donate because of a special event that a friend or family member is hosting. Whatever the reason for their engagement, we are enriched by their participation and care.

Many times the person who engages with the SWF for a reason realizes the value the SWF provides through our extensive network of care, research and awareness and supports the mission through volunteering and/or their donation for a season. The various ways to engage with fellow patients whether in person events, online or networked through healthcare providers there is a rich tapestry to contribute to and to receive from during their journey with SWS, a birthmark or KT. Their partnership creates a broader impact enabling SWF to develop more resources, engage more young investigators and fund vital research while lending support.

The people who partner for a lifetime are like the friends from the old Girl Scout song…”make new friends and keep the old, one is silver and the other’s gold”! They are cherished golden gems which lend their brilliant light of hope and healing with each new friend made and with every encounter they have with old friends from years gone by. They share their rich history of survival over myriad medical crises and of overcoming educational challenges. Sometimes they feel blessed that SWS has only impacted their lives minimally and feel a sense of gratitude to give back and lend a hand up to those in the throes of seizures, glaucoma and laser treatments. They know the value of staying engaged and supporting the SWF, understanding that collectively we have greater strength and drive in forging supportive friendships and the critical research needed to improve the quality of life and care for their loved ones.

I am personally indebted to those folks who have supported the SWF in any capacity.  I have to be honest, I understand why a parent would fund a single institution or physician that has helped their child. Been there done that as it’s been said. It’s also great to fund an event where your child is featured or highlighted for the moment.  There is nothing wrong with the personal nature of that support…it’s good for the soul that is weary and in need of validation. The SWF was founded on the basic principle of “Just the guts, not the glory.”

 In other words, we deliver, support, research, educate, create awareness and are p r e s e n t.  It is not our own personal glory that needs to be touted.  SWS and birthmarks are not about one person’s Dr status, clinic or bike ride.  It is about building a solid foundation upon which people living with these syndromes and birthmarks can take shelter from the storms, recharge and learn to be prepared for new challenges, share their wisdom and expertise and contribute for the GREATER GOOD.

 A reason supporter is a seedling planted in a forest.  A seasonal supporter nurtures that seedling planted and enables strong roots of knowledge and hope to take hold for that reason which brought you to us.  A lifetime supporter provides the perfect blend of nature and nurture as well as sunlight and shade for the seedlings to grow into strong vibrant occupants of this small forest we call SWF. Lifetime supporters as a natural course of nature will die off and it is those who follow in their path which will keep us viable and available for the next generation. We need to do a better job truthfully with the emerging plethora of resources out there now to toot our horn better!

There are key factors one should review to assessing the value and impact of your hard-earned dollars. Here are a few we recommend and why they matter:

Transparent Website

A transparent website provides a page or electronic access to where financials can be reviewed. It provides the donor information on how much of the money was spent on various programs and their results (i.e. periodic research reports, special event funding totals, etc).

Sponsors Patient Forums/Conferences

These venues give much needed support and education for patients and caregivers alike. Healthcare professionals give the latest information and scientific researchers get out of the lab and meet those whom their research impacts. The conference locations and staffing provide equal opportunity and expense for patients to attend (Are they in only one or two locations? Do they move them around the country?) Scholarships further extend the ability for all impacted by a diagnosis to attend. The amount of scholarship funding typically varies based upon annual budget, whether it is a 1, 2 or 3 day conference. Your investment in this type of program produces short term and long-term benefit for all.

Newsletters and Educational Materials

Publications are a great resource to take a deeper dive into articles that inform the reader on medical news, research, stories of hope etc. More and more to benefit the environment we are seeing organizations that publish electronic versions or a combination of electronic and printed versions. Educational materials can be shared with myriad audiences to generate awareness, inspiration and create opportunities to learn. Your investment in this type of program produces short term and long-term impact.


Attendance at industry conferences and academy meetings provides opportunities to highlight the disease/syndrome manifestations, research progress and latest news. Exhibits illuminate young healthcare providers and engages them in one on one discussions which oftentimes builds a spark of interest to become a Champion. Exhibits also bring the exhibitor in direct contact with key opinion leaders building lifelong relationships which drive strategic initiatives. Industry partners are present to visit with on mutually beneficial initiatives. Your investment in this type of program produces long term benefit which starts as a ripple but brings tidal waves of direct patient benefit.


Advocacy in Washington D.C. brings the patient in direct contact with decision makers where they share the challenges of living with a rare disease or progressive complications. Garnering supporters on both sides of the aisle is important to getting increased funding at the National Institutes of Health (NIH), for researchers interested in SWS, birthmarks, glaucoma and seizures. It’s important to also advocate by signing on to key bills which directly impact the patient, healthcare providers and more. Advocacy is more than just on the federal or state level. Insurance and health related matters impact patient care and wellness. Having a well-rounded program is a short term and long-term benefit.

Research Funding

Finding the best and brightest key opinion leaders for their wisdom and young investigators to invest in for the future is imperative to making inroads in our understanding of the natural history and genetic basis of SWS, birthmarks, glaucoma and seizures. Fellowships give young investigators the seed funds to learn from leading mentors and test hypothesis. The donor needs to ascertain which strategy (funding a single researcher/institution or investing in a broader network comprised of diverse fields of research) creates lasting impact and value. Your investment in this program is never a bad decision!

Clinical Care Centers

These centers provide healthcare professionals who are knowledgeable on the syndrome and related co-morbidities. Ideally having one either local or within driving distance would be great since life with a rare disease is a marathon and not a sprint! Time off work or school adds up, not only for medical crises or surgery but for travels too. It is a sign of being a good steward when one invests in building up the next generation of caregivers.  It’s the old hit-by-the-bus theory! Quality of life and care is of utmost importance!

Umbrella Organizations

These organizations ultimately create lasting value and impact for the donor. They can shorten the learning curve on governance challenges, fundraising tips are shared, best practice tools and give the organization who becomes a member of an umbrella a more comprehensive platform for advocacy too. While it may not seem a must-have benefit, participation in these organizations builds relationships and gives access to a network of leaders which make for a more ethical, professional and transparent organization.

Financial Stewards

Does the organization keep fundraising and management and general costs to less than 25%? Anything higher tips the scale in favor of the organization and not providing most comprehensive member benefit. The CFC and NFFP recommend this balance.

The chart included below highlights organizations that address Sturge-Weber syndrome, and vascular birthmarks in some capacity.  To compare apples to apples the Guidestar website was used as a reference.