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

By Todd Cohen

[Note: This article was written for 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.

‘Network mindset’ emerging to address tough problems

The social sector increasingly is changing the way it takes on complex social and global problems, forming collaborative social networks or ecosystems in which organizations can accomplish far more by working together than by working alone, a new report says.

“Networks succeed by sharing resources of all types — technology, money, talent — — across organizations and fields to where they can have the greatest impact,” says Kathleen Enright, president and CEO of Grantmakers for Effective Organizations, or GEO, which released the report and consists of 3,700 individuals representing over 430 grantmakers.

““This approach requires a few dramatic shifts for grantmakers,” Enright says in a statement. “We must share control, prioritize building relationships and get comfortable following instead of leading because moving beyond individual interests is the best way to make more substantial progress in our communities.””

Seventy percent of U.S. foundations work collaboratively through some form of strategic partnership, according to a national GEO survey of grantmaker practice.

“Yet, because networks are by definition loosely controlled,” GEO says, “understanding how to effectively support and leverage networked approaches feels like a mystery to many grantmakers.”

Networks increasingly are “vehicles for tackling challenges where resources are dwarfed by the vision of the task at hand, achieving economies of scale without organizational growth and spreading innovation,” says the report, Cracking the Network Code: Four Principles for Grantmakers.

Key to a “network mindset,” it says, are the principles of placing mission before organization, trust before control, and humility before brand, and of serving as a “node” rather than a “hub.”

“The network mindset is about advancing the mission, even before advancing the organization,” the report says. “Leaders adopt strategies and tactics to achieve the mission, not necessarily to stimulate organizational growth.”

In the network mindset, “trust and shared values are far more important than formal control mechanisms such as contract or accountability systems,” it says.

According to “conventional wisdom,” it says, organizations promote their programs models, build their brands and strive to be leaders in their field.

But in the network mindset, “organizations work alongside their peers as equals and willingly take a back seat when their partners are in a better position to lead,” the report says.

“Those who embrace the network mindset,” it says, “see their organizations as one part of a larger web of activity directed toward a cause, not as the hub of the action.”

Grantmakers “who focus on systemic problems, who are dissatisfied with incremental improvements, who are willing to be patient investors, and who are comfortable with fluidity and uncertainty are ready to consider network opportunities,” the report says.

By adopting a network mindset, grantmakers “can discover countless opportunities to work with other leaders” across the nonprofit, for-profit and public sectors “in ways heretofore unimagined,” it says.

Networks, it says, “hold the potential for generating impact at a scale exponentially greater than the sum of their individual parts.”

— Todd Cohen

Nonprofit news roundup, 07.19.13

Special Olympics North America Conference set for Charlotte

Special Olympics North Carolina will host the largest gathering of Special Olympics leaders from the North America region at the Special Olympics North America Conference from July 22 through July 25 in Charlotte.

Over 800 people representing Special Olympics Programs from the U.S., Canada and the Caribbean are expected to attend the conference, which will be held at the Charlotte Convention Center and venues throughout the Charlotte area.

Junior Achievement names volunteer of the year

Johanna Goodyear, assistant vice president and managing officer for Carter Bank and Trust in Asheboro, has been named Volunteer of the Year by Junior Achievement of Central North Carolina.

Goodyear brought the “JA Experience” to 270 students at Donna Lee Loflin, Lindley Park, and Randleman elementary schools in Randolph County during the 2012-13 school year, and in the past three years has served over 500 students.

She will be recognized at the 2013 Business Hall of Fame event on October 3 at the Greensboro Country Club.

Sisters of Mercy of North Carolina Foundation awards $1.9 million

Sisters of Mercy of North Carolina Foundation awarded grants totaling over $1.9 million to 40 nonprofits in 18 counties.  That included 17 grants totaling $754,000 for social services, 14 grants totaling over $640,000 for education, and 9 grants totaling $548,000 for health care.

Benevolence Farm gets $25,000

Benevolence Farm in Carrboro received a $25,000 grant from The Snider Family Charitable Fund, which also provided $20,000 in seed funding in 2009, plus $120,000 in 2011 to hire an executive director and a professional consultant to help the board of directors create a strategic plan.

Benevolence Farm, which provides an opportunity for women leaving prison to live and work, is in the final stages of securing a donation of land in southern Graham County near Saxapahaw for housing and operation of the farm.

Benevolence Farm will provide housing, a job, social support, and hands-on training for up to 12 women as they transition from prison.

North Carolina Humanities Council awards $45,000

North Carolina Humanities Council, a statewide nonprofit and affiliate of the National Endowment for the Humanities, has awarded six grants totaling $44,952 and ranging from $3,500 to $10,000 for projects in the humanities. All funded programs are free and open to the public.

UnitedHealthcare donates $35,000 for Greensboro police

UnitedHealthcare has donated $35,000 to the Greensboro Police Foundation to fund the purchase of 22 pieces of cardiovascular and weight-training equipment for a new fitness center for the Greensboro Police Department. The gift is the largest ever to the Foundation.

Charlotte tutoring program names executive director

Emily Elliott, a former investment banking analyst with Wells Fargo, middle school math teacher and financial strategy associate with Rocketship Education, a national nonprofit school system that operates public elementary charter schools in low-income areas, has been named the first executive director of HEART, or Helping Ensure Academic Results through Tutoring. Developed by Charlotte nonprofit Social Venture Partners, HEART recruits and empowers volunteers to work as tutors for math in Charlotte’s Title I elementary schools.

Salvation Army honors Boys & Girls Clubs in Winston-Salem

The Salvation Army Ken Carlson Boys & Girls Clubs of Winston-Salem has received the Building Bridges award from The Salvation Army for outstanding improvement in scholastic excellence by its club members for the 2012-13 school year.  The award is given each year to only one Boys & Girls Club in the Carolinas whose program The Salvation Army considers to be exceptionally worthy.

Among the 201 club members enrolled this past school year at The Salvation Army Ken Carlson Boys & Girls Club, 48 percent improved their grade point average, and 26 percent improved their attendance.

Johnston County Community Foundation awards grants

Johnston County Community Foundation, an affiliate of the Raleigh-based North Carolina Community Foundation, awarded community grants to 13 groups and gave its annual Frances Finch Hobart Award for Voluntary Community Service to Tom Ricks, who selected Serve in Need in Johnston County to received a $750 grant from the Frances Finch Hobart endowment fund.

Autism Society gets grant from Speedway Children’s Charities

The Autism Society of North Carolina received a $3,800 grant from Speedway Children’s Charities to provide recreational equipment for Camp Royall in Chatham County. This summer, roughly 350 campers will attend Camp Royall, which provides individuals with autism a week of traditional camping activities and is the only camp specifically for residents of North Carolina with autism.

Franklin County Community Foundation awards grants

Franklin County Community Foundation, an affiliate of the North Carolina Community Foundation, awarded 2013 community grants to Make a Wish Foundation, Prevent Blindness, Girl Scouts NC – Coastal Pines, and Autism Society of North Carolina for the Camp Royall Scholarship program.

Donor advised funds post growth

Fidelity Charitable and Schwab Charitable, two big national donor advised fund programs, reported growth in contributions from donors, and in grants from funds to charities.

Donor advised funds let investors contribute cash or appreciated assets or both to a charitable account, and then use those accounts to support charities.

At Schwab Charitable, assets under management grew 55 percent to $4.8 billion in the fiscal year ended June 30, 2013, compared to the previous year, while grants to charities grew 12 percent to $600 million.

Schwab Charitable also doubled its new accounts.

Since its inception, Schwab Charitable has received over $8 billion in contributions and facilitated over $3.6 billion in grants to charities on behalf of its donors.

At Fidelity Charitable, donors recommended over 214,000 grants totaling $919 million in the first six months of 2013, up 33 percent from the same period a year earlier, while contributions from donors’ charitable accounts grew 7 percent to $879 million.

New charitable accounts in the first six months totaled 1,640, up 43 percent from the first half of 2012.

Grants of $1 million or more to nonprofits grew 50 percent, helping to boost the average grant size to $4,285, up 10 percent from the first half of 2012.

Forty-three percent of contributions from donors to their accounts came in the form of securities, with the remainder in the form of cash.

Non-publicly traded assets, such as private stock, accounted for five percent of contributions.

Since it was established in 1991, Fidelity Charitable has worked with donors to support over 160,000 nonprofits with over $14 billion in grants.

Fidelity Charitable attributed to referrals from professional advisers over 70 percent of contributions made in the first half of the year, and over 60 percent of new charitable accounts established.

Schwab Charitable cited the 2013 RIA Benchmarking Study from Charles Schwab, released last week, that found 54 percent of all firms with assets under management of $25 million or more currently offer charitable planning services.

Of those firms, 85 percent of those firms indicated at least some of their clients are using those services, and 34 percent are considering considering offering charitable planning in the future.

Among firms with assets under management totaling $50 million to $100 million, 50 percent are considering offering charitable planning in the next year to 18 months.

— Todd Cohen

Bensen named president of Kenan Funds

By Todd Cohen

CHAPEL HILL, N.C. — Mark Bensen, the former executive vice president of Durham-based think-tank MDC Inc. who served for less than two months last year as president and CEO of Triangle Community Foundation in Durham before his abrupt departure, has been named president of The William R. Kenan Jr. Funds in Chapel Hill.

Bensen previously served as executive director of the Lucy Daniels Foundation in Cary and associate director of the Kenan Institute for Engineering, Technology and Science at N.C. State University in Raleigh.

Supported by The William R. Kenan Jr. Charitable Trust in Chapel Hill, the Kenan Funds support the Kenan Institute at N.C. State, as well as Kenan Institutes at the Kenan-Flagler Business School at the University of North Carolina at Chapel Hill, the UNC School of the Arts, and Duke University that focus, respectively on private enterprise, the arts and ethics.

In fiscal 2011, the most recent year for which 990 tax returns filed with the Internal Revenue Service are available at the Foundation Center, assets of the four Kenan Funds totaled over $125 million.

Nonprofit works to help homeless families find stability

By Todd Cohen

RALEIGH, N.C. — Two years ago, PLM Families Together provided emergency housing for homeless families at 33 Raleigh apartments it owned and leased.

But the nonprofit found that, even though its program was intended to provide short-term housing for families in crisis, they tended to settle in rather than working aggressively to “move on to their own permanent place,” says Beth Bordeaux, executive director of the nonprofit.

Short-term housing creates more of a “home-like” environment than many homeless families have been used to, and it becomes easy to begin to build their lives around the “illusion” of a sense of stability and in the process lose a “sense of urgency,” she says.

“The sense of urgency is what’s necessary to make change happen,” she says. “We want  that stability to start when people are in their own place, not our place.”

To help keep its client families motivated to rebuild their lives, she says, PLM Families Together decided a year ago to reduce the number of apartments it used for emergency housing and expand its program by providing “rehousing” services.

Those services, consisting of financial support and intensive case management support, are designed to get families out of emergency housing  and into their own apartments.

The new strategy, launched in February, has begun to show results: In the fiscal year that ended June 30, the agency moved roughly 70 families into permanent housing, up from 57 families a year earlier.

“One of the difficulties that families have is dealing with those initial expenses of moving in,” Bordeaux says.

“The families we work with all have income,” she says. “Most of them are working families. They’re at a place or close to a place where they can afford to live in an apartment they lease themselves.”

But they typically experience an “event,” such as the loss of a job or a car, a medical issue, or even the loss of an apartment because a landlord ran into financial difficulty, she says, that “pushes them over the edge” and leaves them homeless.

PLM Families Services still owns eight apartments, including six for families and two it uses for offices, and leases another four apartments.

And it provides financial support to help families move out of its short-term housing and into their own apartments, plus rent for the first few months in their new apartments, as well as case management services for a year.

Those services include meetings at least once a week, at least initially, and assistance in creating and following a household budget; determining how big an apartment the family needs and can afford; reviewing the lease; and meeting and learning how to work with a landlord.

A mentor advocate from the agency also attends the lease signing to provide any support or information the family may need.

Operating with an annual budget of $800,000 and a staff of seven people, plus volunteer interns from schools of social work at Triangle universities, PLM Families Together over the past three years has reduced to 50 percent from 60 percent the share of its funding from government, and aims to reduce it even more this year, with the remainder coming from private support.

This year, it raised $130,000 in its first-ever annual campaign.

And on October 24, it will host a fundraising dinner and evening of jazz at the Brownstone DoubleTree on Hillsborough Street in Raleigh. The event last year raised roughly $100,000.

“Government money is not always going to be stable money,” Bordeaux says. “It’s also good business to have a diversified funding stream.”