Charlotte Bridge Home works to assist veterans

By Todd Cohen

CHARLOTTE, N.C. — One million veterans are expected to return to the U.S. over the next five years as the armed forces and military conflicts shrink, and at least 6,000 to 10,000 of those veterans are expected to be moving to the Charlotte region.

Helping veterans and their families successfully make the transition from military service is the focus of Charlotte Bridge Home, a nonprofit that has served 475 veterans and their dependents since it was formed in 2011.

In 2012, Charlotte Bridge Home spearheaded a community-wide planning effort that led to a Veterans Summit last March that attracted 450 participants, including representative of 26 military and other government agencies, 25 nonprofits and 66 for-profit companies.

“It was the beginning of an effort to form a coalition of employers to hire and retain more veterans,” says Cindi Basenspiler, an Army veteran who recently joined the nonprofit as executive director.

Basenspiler has focused much of her career on human resources.

Most recently, she served as vice president for human resources operations for Time Warner Cable, which has corporate headquarters in Charlotte and New York and employs 53,000 people.

Before that, she served as director of global human resources operations for Kennametal, based in Latrobe, Penna., and as vice president for human resources operations for Acuity Brands Lighting in Atlanta.

An Army captain who served as a Chinook helicopter pilot at Fort Mill, Okla., and Fort Rucker, Ala., and for two tours in South Korea, she also served as the recruiting officer for Army ROTC and as program director for equal opportunity, both in South Colorado.

Operating with an annual budget of roughly $600,000 and a staff of five people, Charlotte Bridge Home launched a campaign in June, known as the Charlotte Alliance for Veteran Employment, to enlist up to 50 companies in the region that would agree to hire at least one veteran.

The nonprofit already has connected with 15 companies about the campaign, and three have committed themselves to hire more veterans, Basenspiler says.

As part of its effort to build a coordinated network of services for nonprofits, Charlotte Bridge Home aims to team employers with one another so they can share information about how to work more effectively with veterans.

And it is has commissioned a consultant to evaluate the efficiency of its intake process.

Charlotte Bridge Home needs to assess quickly whether veterans who contact it have medical needs that can be assisted by the U.S. Department of Veteran Affairs or a hospital or clinic, and whether they have legal, employment or other needs.

“We track each veteran, and we also track each service provider to ensure the veteran doesn’t slip through the cracks,” Basenspiler says.

Charlotte Bridge Home also is working to develop collaborative relationships with other agencies providing services that veterans and their families may need, such as finding a job, temporary housing or legal advice; navigating employment or education benefits; or preparing for a job interview.

The nonprofit expects to serve 450 veterans and their dependents this year, up from 212 last year and 32 in 2011.

In 2012, it received 61 percent of its funds from foundations, 21 percent from corporations and 18 percent from individuals.

And for two years it has been a beneficiary of proceeds from the Southern Spring Home & Garden Show, receiving a significant share of its funding from the annual show.

“We’re building a coalition of employers to hire more veterans,” Basenpiler says, “and sign up more service-provider partners to whom we can connect veterans.”

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Causes, not organizations, seen as key for Millennials

To effectively engage Millennials, or people ages 20 to 33, nonprofits should focus on how the causes they care about affect individuals, while also delivering their messages using digital devices and social media that generation prefers, a new report says.

“Millennials are challenging the traditional methods of communication and marketing,” Derrick Feldmann of Achieve, a creative agency that released the report, says in a statement.

“Millennials want to succinctly know how their time, social media post, petition signing, and dollar will have an impact on the individual needing help or the issue they care about,” he says.

In fact, says the 2013 Millennial Impact Report, Millennials “number one pet peeve” is telemarketing and phone-based fundraising.

The report draws conclusions from previous research on over 11,000 Millennials, and from a national online survey that drew over 2,600 responses from 14 partner institutions, as well as video recorded feedback from 100 Millennial participants who tested nonprofit social media approaches, mobile websites, digital presence, and marketing messages.

After email, Facebook is the method Millennials prefer to stay current on organization issues, the report says.

Eighty-three percent of Millennials use smartphones, it says, and the two major activities they perform on their smartphones are reading email and following organizations on Facebook.

Mobile friendly websites are the most important feature from organizations that Millennials want on their smartphones, and they actively follow up to five organizations in social media.

The top action Millennials take on websites is to connect to the organization’s social media channels.

Key reasons Millennials volunteer are from passion, to make a difference for a cause they care about, and to meet other people passionate about the cause, the report says.

The most popular peer fundraising approaches Millennials use are run, race and walk events, the report says, and Millennials increasingly prefer to ask for a donation to an organization rather than to receive personal gifts.

When Millennials make donations, the mainly use and prefer online websites, and they are more likely to donate when the organizations explains how the gift will affect an individual, the report says

— Todd Cohen

Triangle Community Foundation posts growth

By Todd Cohen

[Note: I am working with Triangle Community Foundation as senior communications adviser.]

DURHAM, N.C. — Triangle Community Foundation posted growth in new funds, total gifts, grants and scholarships, and endowment and assets over the past year.

“We’re happy to see so many of our donors and community partners continuing to engage in and support important causes in our community, and honored to play a role in this work,” says Lori O’Keefe, president of the Foundation.

New funds expand

For the fiscal year ended June 30, 46 new funds were created at the Foundation, up from 33 the previous year, and they ranged in size from $10,000, the minimum allowed, to an estate gift totaling $2.5 million.

New funds totaled $6.5 million, up from $6 million a year earlier, and total gifts, including new funds, totaled $16.8 million up from $16.3 million a year earlier.

“The market has a lot to do with it,” says Jessica Banks Gilmour Aylor, director of development and community partnerships at the Foundation. “Any time we have donors with appreciated assets is the time they will give to charitable organizations.”

Endowment assets grow

As of June 30, endowment assets at the Foundation consisted of over 300 funds totaling $94 million, or nearly 60 percent of all assets, up from $86 million in total endowment assets a year earlier.

Overall assets — including fixed-income and equity investments, as well as pass-through funds that are not invested — grew to $160 million in the year ended June 30 from $145 million a year earlier.

Scholarships increase

For the 2012-13 school year, the Foundation awarded scholarships totaling $654,000 from 49 different scholarship funds to 145 students, with the largest totaling $60,000 over three years and the average award totaling $4,500.

For the 2013-14 school year, the Foundation already has awarded scholarships totaling $628,000 from 51 different scholarship funds to 115 students, and expects the total to be roughly $670,000. The largest scholarship so far totals $60,000 over three years, and the average award so far totals $5,500.

Grants and gifts grow

The Foundation made $13.8 million in grants in the fiscal year ended June 30, up from $13.2 million a year earlier. Of the total grants, $11.6 million came from donor advised funds, up from $10.7 million a year earlier.

Roughly 70 percent of grants from donor advised funds in the most recent fiscal year stayed in the Triangle.

Gifts to the foundation in the most recent fiscal year totaled $16.9 million, up from $16.3 million a year earlier. Of the total gifts, $12.7 million were given to donor advised funds, up from $8.5 million a year earlier.

Family philanthropy

During the year, the foundation launched a series of five education sessions to talk to fundholders about family philanthropy.

The sessions focused on topics such as how to involve family members in the family’s philanthropy, how to get the family’s next generation involved in philanthropy, how to think about creating a family’s philanthropic legacy, and the range of charitable giving options through estate planning.

The Foundation plans to offer more education sessions this year, probably two this fall and two next spring.

Donor education

The Foundation sponsored or co-sponsored four sessions for the Triangle Donors Forum. The sessions focused on the impact of funding cuts on nonprofits; capacity-building for nonprofits; homelessness; and collaboration.

The Foundation plans to sponsor four more sessions this year, some of which likely will be tied to new community programs we are developing.

Incentive pay plan for UNC fundraising chief raises eyebrows

By Todd Cohen

CHAPEL HILL, N.C. — In a highly unusual move, the board of trustees at the University of North Carolina at Chapel Hill on Thursday approved a proposal by Chancellor Carol Folt to let the next vice chancellor for development receive incentive pay of up to 25 percent of his or her base pay by meeting goals set by Folt.

UNC, which is searching for a permanent fundraising chief, now can pay the new vice chancellor up to nearly $396,000 a year, based on a maximum set by General Administration for the 17-campus UNC system, according to The Herald-Sun in Durham.

That means the new vice chancellor could earn nearly $99,000 in incentive pay in addition to his or her base pay.

Speculation is that Folt may have a candidate in mind who already is paid over $500,000 a year, or wants to be paid that amount.

Incentive pay, if based on a percentage of contributions, could run counter to ethical principles for fundraising because it could give at least the appearance that, in soliciting gifts from donors, fundraising professionals might be acting in their own self-interest and also might be trying to secure a gift sooner than they otherwise would have.

Folt, former interim president at Dartmouth, succeeded Holden Thorp on July 1 after he resigned last September in the face of a controversy involving Matt Kupec, who the same week quit as vice chancellor for university advancement.

Earlier this year, before taking office but after she was hired, Folt participated in the decision to dismiss search firm Witt/Kieffer from the search for Kupec’s permanent successor.

Thorp had initiated the search after he announced his resignation but before he stepped down this summer.

Search firm Isaacson, Miller since has been hired to conduct the search.

Julia Sprunt Grumbles, former corporate vice president at Turner Broadcasting, is serving as interim vice chancellor for university advancement.

Thorp hired her after Kupec quit.

In the face of all the maneuvers over filling the University’s chief fundraising job, the plans for a long-delayed comprehensive campaign that at one time was expected to total $3 billion remain in limbo.

Nonprofit news roundup, 07.26.13

Kupec working at digital fundraising firm

Matt Kupec, who resigned last year as vice chancellor for university advancement at the University of North Carolina at Chapel Hill, now is working as president and chief operating officer at text2give, a mobile-technology fundraising firm in Chapel Hill.

During the 21 years Kupec served as its chief fundraiser, UNC-CH raised $5 billion, including $2.38 billion in its most recent campaign.

Last September, Kupec and then-Chancellor Holden Thorp both quit in the wake of disclosures that Kupec and another fundraiser at UNC with whom he was having a romantic relationship had taken at least 25 personal trips at the University’s expense.

Child Care Services program gets $1 million grant

The T.E.A.C.H. National Technical Assistance and Quality Assurance Center, a program of Child Care Services Association in Chapel Hill, received a W.K. Kellogg Foundation grant of just over $1 million.

The grant will allow the Center to expand its capacity to reach early educators across the U.S. with educational scholarships to increase their knowledge and skills and give them access to a college degree.

It also will allow the Center to focus efforts on increasing these opportunities specifically for teachers working with vulnerable children in early care and education settings.

Bar Association Foundation awards $128,000

North Carolina Bar Association Foundation awarded 16 endowment grants totaling $127,874 for the second half of 2013,  including nine statewide and seven local and regional grants.

The grants support four legal service projects; three law school projects; two law student outreach programs; two youth outreach projects; one judicial project; and one project each in Wake County, Winston-Salem, Asheville and Charlotte.

The semi-annual grants assist dozens of statewide bar and legally related service and educational projects of many bar-affiliated nonprofits.

Since 1957, the Foundation has awarded 555 endowment grants totaling over $4.3 million.

BJH Foundation for Senior Services awards $203,000

The BJH Foundation for Senior Services, based in Greensboro, has awarded 21 grants totaling over $203,230 to help fund programs  for Jewish older adults in the Carolinas.

Funding for those projects supports programs such as elder day care, congregational nurse and social worker programs, home and community services, guardianship and care management.

The Foundation, which has a $7 million endowment, over the past seven years has awarded over $1.4 million to qualifying nonprofits that support Jewish older adults.

According to the National Jewish Population Survey, the Foundation says, the Jewish community is rapidly aging across the U.S., with the number of Jewish older adults more than doubling to over 1 million from 1957 to 2012.

John Rex Endowment awards two grants to assess capacity

Passage Home and Wake Education Partnership, both in Raleigh, each will receive an $11,000 grant from the John Rex Endowment to support organizational assessments of their organizational capacity.

The Raleigh-based John Rex Endowment has invested nearly $1.25 million since October 2009 to support capacity building for 29 local nonprofits.

Applications being accepted for grants from statewide Women’s Fund

North Carolina Community Foundation is accepting grant applications for projects funded from its statewide Women’s Fund.

Funds are available for nonprofits that sponsor programming that supports women or families, or both, within the Foundation’s 67-county service area, with particular emphasis on women’s health and leadership issues.

Applications will be accepted online only at nccommunityfoundation.org and are due on or before August 16.

Raleigh Rotary Club names board members

The Raleigh Rotary Club, North Carolina’s oldest civic organization, has named new board members for 2013-14, including Rusine Mitchell Sinclair, who is serving as president, and Cindy Poole, Reagan Weaver, Brad Krehely, Mark Livingston, Mary Moss, John Connell, Kirk Warner, Steele Hall, Aaron Guyton, Eric Larson and Mike Tadych.

Salvation Army of Greensboro gets $3,500

The Salvation Army of Greensboro received $3,500 from the Food Lion Charitable Foundation and will use the gift to pay for food that is prepared for the people who live at The Salvation Army’s Center of Hope shelter.

Student conference to focus on poverty

Nourish International, a nonprofit based in Carrboro, will host its sixth annual Summer Institute August 1-5 on the campus University of North Carolina at Chapel Hill. The five-day institute will bring student chapter representatives from 45 college campuses for workshops, mentoring and hands-on training to engage in a platform for action around making a lasting impact on extreme poverty.

Goodwill Industries awards scholarships

Goodwill Industries of Northwest North Carolina in Winston-Salem has awarded scholarships for academic achievement to the children of nine Goodwill employees through the Dr. Bob H. Greene College Scholarship Program.

Urban Ministries drive at half-way mark

The “52 Week Food Drive,” a campaign by Urban Ministries of Wake County to feed more of the 90,000 Wake County residents living in poverty, has filled half of the available weeks of 2013. The Food Pantry at Urban Ministries is the second largest in Wake County, serving up to 40 families per day.  Last year, Urban Ministries distributed a week’s worth of groceries – 240 tons of donated food – to over 8,000 families forced to choose between food and other obligations.

North Carolina Eye Bank gives $50,000

The North Carolina Eye Bank has awarded $50,000 to the Wake Forest Eye Center at Wake Forest Baptist Medical Center to support the Eye Center’s cornea fellowship and cornea research.
The Eye Center, a multispecialty ophthalmology clinic with over 120,000 patient visits a year, is nationally recognized for its cornea transplant program. The Eye Bank supplies tissue for transplantation and provides over 3,000 corneas for transplant each year.

Shifting demographics create challenges, opportunities

By Todd Cohen

[Note: This was written for Triangle Community Foundation. I am working with the Foundation as senior communications adviser.]

RALEIGH, N.C. — Mirroring national and state trends, the Triangle is undergoing sweeping changes in who we are and how we live and work, creating challenges and opportunities for nonprofits that address human needs, for government agencies that provide and plan for basic services, and for businesses that operate in the marketplace.

The population is getting grayer and browner. Families and households are getting smaller, many consisting of a single person, and others encompassing multiple generations. And the labor force is headed for big shortages.

“These demographic changes have implications for how we plan for our communities,” says Mitchell Silver, chief planning and development officer for the city of Raleigh and director of its department of city planning. “It’s better to be prepared than to be in denial.”

‘Silver tsunami’

By 2030, one in five North Carolinians and Americans will be over age 65, and by 2050, life expectancy will be 82.6 years, says Silver, who just completed a two-year term as president of the American Planning Association.

The graying of America, combined with an exodus of young people from rural regions, has led to a declining population in many rural counties, including roughly 25 of North Carolina’s 100 counties, Silver says.

That decline, coupled with the migration of those young people to urban areas, has led to a shrinking tax base and workforce in rural counties, he says.

Whether they live in urban, suburban or rural areas, he says, older Americans who no longer can drive have fewer choices about how to get around and get access to health care and other services they need.

That is particularly true in rural counties because many people do not live as close to health services as they do in urban areas.

“A huge issue as people age is what are they going to do in terms of mobility,” Silver says.

And as a result of the “Baby Bust” that followed the “Baby Boom” — the surge in births from 1946 through 1964 — there are “not enough workers to take care of Boomers as they age,” Silver says. “It’s a ‘silver tsunami.’ Most of us aren’t prepared for what’s coming.”

Senior housing

Seniors also are looking for different types of housing, Silver says.

They want master bedrooms on the ground floor, fewer steps to climb, and easier access to their home if they use a wheelchair.

“Currently the market doesn’t provide for that type of housing in large quantity,” he says.

Emil Malizia, a professor of city and regional planning at the University of North Carolina at Chapel Hill and director of its Institute for Economic Development, says many older people have fewer options for where to live.

So while a number of pricey “congregate care retirement communities” have been developed in the Triangle, their cost is beyond the means of many elderly people, who likely will need to stay in their homes.

College towns like Durham and Chapel Hill also have become retirement destinations, mainly because they are home to university medical centers that provide good medical care,  and they offer relatively inexpensive entertainment, Malizia says.

Mobile services

Mack Koonce, president and CEO of United Way of the Greater Triangle, says a big challenge for nonprofits will be to “learn to take services” to older constituents.

That will require both “mobile” services and “place-based” services, he says.

Meals on Wheels in Durham, Orange and Wake counties, for example, received a funding increase this year from United Way that was bigger than the average increase for United Way agencies overall, Koonce says.

“Over the next couple of years, we and other organizations are going to expand our support for mobile services,” he says.

Wave of volunteers

The aging of the population, Koonce says, will create a big wave of volunteers and people looking for second careers who nonprofits “need to continue to engage.”

So nonprofits should look for ways to connect with people who are retired or semi-retired, he says.

“That’s a huge resource we all need to tap into,” he says.

It also will be important for nonprofits to engage the increasingly diverse mix of constituents — reflecting such differences as age, ethnicity and gender — in helping to identify needs and develop strategies to address them, he says.

Household shifts

The size of families and households is getting smaller, with fewer people getting married, particularly those age 25 to 34, Silver says, and the birth rate overall is declining, dropping dramatically among whites.

Hispanics are not having as many children as their parents did, he says, although they still are having more children, while the birth rate for blacks is roughly flat.

Because fewer people are getting married, and the number of widowers is growing, most households in the U.S. by 2025 will consist of one person only, Silver says.

The number of multi-generational households also is increasing, and many seniors who cannot care for themselves, or afford to, are moving in with their children, while many students during the recession moved home after college because they could not find jobs.

Affordable housing

Silver says many local governments are not prepared to deal with the implications of the surge in single-person households.

Individuals looking for a home increasingly are looking for a small home, and they increasingly prefer to rent rather than to own, he says.

Yet new development in most communities typically consists of single-family subdivisions.

“What type of housing do you build for a single person?,” Silver says. “It’s a function of market demand.”

In Raleigh, for example, 72 percent of all residential permits the city issued in the last 12 months were for multi-family housing, he says.

“And that’s without public intervention,” he says. “That was just the market looking at where the market was.”

Urban development

Malizia says the region’s “very significant need” for affordable housing and transportation is a long-standing problem that is “certainly being exacerbated by having older households that are less affluent and less mobile.”

The “most obvious way of dealing with it is to identify strategies to increase urban development,” he says.

But that approach, known as “density,” has not worked in the region, he says.

“Most people have negative associations with density,” he says.

‘Vibrant centers’

The key to create vital places to live, Malizia says, is to generate activity and provide access.

“The more you put into the center, the more vibrant it becomes,” he says. “People who live in it or near it recognize that more is better.”

Sprawl development, however, “means onward and outward, and whatever benefits the new development generates are enjoyed by the new residents who occupy that area, but it doesn’t benefit the neighbors.”

A new subdivision simply generates more traffic and congestion for residents of adjacent subdivisions, and those existing residents see the new growth as a negative, he says.

“So more is not better,” he says. “As we have suburbanized, we have generated negative attitudes towards development because new development doesn’t not necessarily benefit existing residents.”

The key, he says, is not to avoid dense development but to do it right by creating “vibrant centers” that are cost-effective and benefit everyone by providing and making accessible to them all the services and activities they they need to live, work and play.

“People hate density in the U.S. because we’ve done it badly,” he says.

Accessible and affordable

Because planning has become so “participatory,” with government making decisions that increasingly reflect public input, Malizia says, “we empower people who hate development and growth to be major players in the planning process.”

Many people who participate in that public process tend to live in neighborhoods that are “organized and run by affluent, educated people,” he says. “They know how politics works. You have a formidable opposition for any project they don’t like, and it’s hard to find a project they like.”

Still, he says, “compact, mixed-use, urban-type development that’s located near bus lines turns out to make a lot more sense from a tax-revenue, government-expenditure standpoint than more suburban low-density sprawl.”

So as “local governments become more and more financially challenged,”  development should be designed to provide “more accessible, more affordable housing,” he says.

“Transit-oriented vibrant centers,” he says, “concentrate development, allow more open space, and represent an economically and fiscally sound land-use strategy.”

Based on their age and other factors, people typically have preferences for where they want to live, Malizia says.

“Shouldn’t we try to provide services or assistance,” he says, “in a way that allows people to stay in their neighborhoods?”

‘Browning of America’

By 2043, the U.S. will have no majority race, Silver says.

In Raleigh, where 53 percent of the population currently is white, the majority of the population by the 2020s likely will consist of minorities, he says.

Malizia says that while the “browning” of the population cuts across lines of age, income and education, the Triangle’s construction and service industries have attracted a lot of Latino immigrants to the region and kept them here.

‘Cultural competence’

Koonce says the region’s increasingly diverse population will place demands on nonprofits for greater “cultural competence.”

Agencies that provide social services will need to be more sensitive to the diversity and different backgrounds of constituents, better understanding the family structures and other issues important to different cultural groups, particularly immigrants, he says.

So nonprofits will need to train their staffs to be “competent in dealing with those different cultures,” he says.

In making decisions about which organizations to fund, particularly in the areas of education and youth services, he says, one factor United Way considers is excellence in the organization’s cultural competence.

Labor force

With the Baby Bust generation following in the wake of the Baby Boom generation, Silver says, experts are predicting a shortage in the labor force.

That is a trend in many countries, he says, with the median age increasing.

Options for addressing the looming workforce shortage include people working longer, an increase in immigration to fill jobs, and handling more manufacturing and service jobs through automation, Silver says.

“I believe immigration will play a major role,” he says.

Anticipation

“Smart cities know their sense of urgency 10 years before it’s urgent, and in Raleigh and the Triangle, we’re trying to be smart,” Silver says.

“I believe planners, nonprofits and policymakers need to understand emerging trends the way stockbrokers watch the market,” he says. “I want to know what’s coming so I can share it with elected officials, the public and business so we can be prepared.”

Huntington’s disease could hold key to Alzheimer’s treatment

By Todd Cohen

[Note: This article was written for NCPressRelease.com on behalf of HD Reach.]

DURHAM, N.C. — Huntington’s disease, or HD, an inherited brain disorder that affects roughly 30,000 people in the U.S., could hold the key to finding treatments or even a cure for Alzheimer’s and other major neurological disorders that affect millions of people.

What sets HD apart from other central nervous system disorders and makes HD research critical is that everyone who carries the abnormal gene will get the disease.

“HD really is the paradigmatic neurodegenerative disease because a single gene leads to degeneration of certain parts of the central nervous system of the brain,” says Dr. Donald Lo, associate professor in the Department of Neurobiology at Duke University Medical Center.

“So most researchers and the pharmaceutical industry feel if you could cure Huntington’s disease, you would gain tremendous insight into treating many of these other neurodegenerative disorders,” such as Alzheimer’s, Parkinson’s and amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease, he says.

HD research will be the focus of the 7th Annual Huntington Study Group Clinical Research Symposium, which will be held November 7-9 at the Omni Hotel in Charlotte.

The event is jointly sponsored by Charlotte AHEC and the Huntington Study Group, an international network of clinical researchers who study and care for patients and families with Huntington’s disease.

The Symposium also will feature networking for regional doctors and health care providers; continuing education for medical professionals; and training programs for service providers, caregivers and local practitioners, including workshops focusing on the latest advances in medical and family care.

Unprecedented levels of philanthropic funding and research are focused on HD, says Lo, who directs the Duke Center for Drug Discovery.

The Huntington Study Group network of nearly 100 medical centers, along with pharmaceutical companies and academic labs, are developing molecular strategies to block the production of the HD gene or slow the progression of the disease, Lo says.

“Many of these are very exciting new drug candidates,” he says.

HD, which affects control of movement, thought and behavior, typically results in death 15 to 25 years after onset of motor signs of the disease.

In contrast to HD, which results from a single abnormal gene, the origins of Alzheimer’s and Parkinson’s are largely unknown, Lo says.

Age is the greatest risk factor for Parkinson’s and Alzheimer’s, which affects over 5 million people in the U.S., a number that is expected to grow to 20 million within 50 years, he says.

“So with the aging population, the prevalence is expected to go up tremendously,” he says.

Lo began to focus his research on HD after spinning out a biotech firm from Duke in 1999 to develop new ways of discovering new drugs and drug targets for neurological disorders while also trying to break some of the “logjams” in the pharmaceutical industry slowing research into major diseases.

“We worked on HD because of the absolutely clear genetics of the disease,” he says. “If you carry the disease form of the gene, you will absolutely get the disease during your life.   The other major neurological disorders have genes that are risk factors but only a small fraction of those genes lead directly to the disorder…”

HD research now is getting a total of over $100 million a year from three philanthropic funders, including CHDI Foundation, Hereditary Disease Foundation, and Huntington’s Disease Society of America, plus about $55 million from the National Institutes of Health.

That philanthropic investment, representing over 10 times what HD research had received in the past, has driven unprecedented levels of collaboration among academic labs, biotech firms and pharmaceutical companies, Lo says.

“There is growing commitment in the pharmaceutical industry towards Huntington’s disease,” he says.

Philanthropic investment has stimulated interest from industry, which has in past years been more committed to more prevalent diseases because of their perceived market size, Lo says.

In addition to serving as the annual get-together for the HD research and patient communities, providing an opportunity to discuss and evaluate new and existing strategies for treating HD, the Symposium also focuses on advances in local social and medical care that are critical to caregivers who treat HD patients and families.

“It puts a real spotlight on a disease that affects many people in the state of North Carolina, a state that has not had a strong statewide infrastructure for taking care of HD patients and patient families,” Lo says.

But that is changing, thanks to HD Reach, a North Carolina-based nonprofit that is pioneering efforts to make sure patients and families throughout the state have access to HD care and resources.

“Historically, HD patients have been best taken care of in major urban areas where there are major medical centers that have specialized clinics for HD,” says Lo, who serves as vice president of HD Reach. “In more rural states like North Carolina, the urban model doesn’t work because much of the population doesn’t live in urban areas.”

The goal at HD Reach, he says, is to “create a different kind of care network for HD patients and families.”

While advances in medical research and technologies will be a big focus of the Symposium, it also will look at issues of local social and medical care that affect the caregivers who treat HD patients and families.

The work of HD Reach and similar efforts in other states to find ways “to bring quality care to patients in non-urban areas,” Lo says, is a major concern for the Huntington Study Group.