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Huntington’s Disease Awareness

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What is Huntington’s Disease?
Huntington’s disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complication.

Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it onto each of their children.

Presently, there is no cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD.

Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.

Every person who inherits the expanded HD gene will eventually develop the disease.
Over time, HD affects the individual’s ability to reason, walk and speak

Symptoms Include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech and difficulty in swallowing

The Scope of HD
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation. The Huntington’s Disease

Society of America (HDSA) has a nationwide network that provides support and referrals for individuals with HD and their families.

Genetic Testing for HD
Individuals can be tested for the gene that causes HD. The test may be used to confirm a diagnosis of HD, but may also be used as a predictive test before symptoms arise. Some individuals at-risk for HD feel that it is important to know whether they carry the gene. Others ultimately choose not to be tested. While the actual procedure is simple, the decision to have the test is not. HDSA recommends that persons wishing to undergo presymptomatic testing for HD do so at one of our HDSA Centers of Excellence, or at a testing center with specific training in working with HD. A list of these testing centers is available from HDSA

HD affects both sexes and all races and ethnic groups around the world.
The Decision to test is highly personal and should never be rushed or forced.

Who is At-Risk?
Every child of a parent with HD has a  50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act (GINA) protects people from discrimination by health insurers and employers on the basis of their DNA information. This federal law also enables individuals to take part in research studies without fear that their DNA information might be used against them by health insurers or in the workplace.

However, GINA protections do not extend to long term care, disability or life insurance policies. Anyone contemplating testing should first consider adding one or more of these types of policies before starting the testing process.

Advocacy
HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals. Learn more at www.hdsa.org/advocacy.

Join us in the fight against HD
YOU can help HDSA in our efforts to end HD and provide resources for those who must face this disease daily. Both funds and volunteers are needed. Contact the HDSA National Office to find out how YOU can help.

HD does not skip generations; if one does not inherit the expanded gene, one cannot pass it on

An End To HD?
In 1993, researchers identified the gene that causes HD. Since then, research has moved quickly towards developing treatments and, ultimately, a cure. HDSA supports the goals of clinical and basic research at leading research facilities globally.

Clinical and observational trials are an important way you can help to sustain the momentum of HD research and move potential new therapies through the approval process. Visit the Research section of the HDSA website for more information and to find a trial in your area. There are opportunities for all HD family members – gene positive, at-risk, gene negative, and caregivers – to participate.

About HDSA
The Huntington’s Disease Society of America (HDSA) is the largest 501(C)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States.

Where to find help
You are not alone in facing HD. HDSA has developed a nationwide network that includes Chapters and Affiliates, HDSA Centers of Excellence, Support Groups, and Social Workers that are ready to assist you with referrals and resources in your area. To learn more, please visit www.hdsa.org or call 888-HDSA-506.

Research worldwide is working to unlock the mystery of HD and find a cure

Recreation Opportunities For People With Disabilities

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All Out Adventures
All Out Adventures provides outdoor accessible recreational opportunities throughout Massachusetts for people of all abilities, their families and friends. Summer programs include accessible kayaking, canoeing, hiking and cycling. Winter programs include snowshoeing, x-country skiing & sit-skiing, ice skating, sled skating and snowmobile rides.

Accessible Swimming Pools
Accessible Swimming Pools outdoor swimming pool lifts are available at all of the State Parks and Recreation Department’s 20 swimming pools. The pools are free. Contact pool directly for information about other site factors affecting accessibility.

AccesSport America
AccesSport America is a national, non-profit organization dedicated to the discovery of higher function, fitness, and fun for children and adults with disabilities through high-challenge sports, which include kayaking, windsurfing and water skiing.

Arcs.
Local Arcs provide a variety of social and recreational activities for children and teens with developmental disabilities.

Bostnet / Guide to Boston’s Before & After School Programs
Build the Out-of-School Time Network (BOSTnet) has built a network of out-of-school time (OST) resources and opportunities for all children and youth, including those from low-income families and youth with disabilities.

Broadmoor Wildlife Sanctuary
Broadmoor Wildlife Sanctuary offers nine miles of walking trails guiding through a variety of field, woodland, and wetland habitats. A quarter-mile, handicap accessible trail and boardwalk along the bank of Indian Brook. Universally accessible facilities: Nature Center, Restrooms, All Persons Trail.

BSC (Boston Sports Club) Adaptive Swim Program
On Monday and Wednesday evening, between 6:30pm and 7:30pm, BSC Waltham (840 Winter Street) offers an adaptive swim program for children, youth, adolescents and adults with disabilities in our 93 degree therapy pool. Volunteers between the ages of 16-20 from neighboring schools and organizations offer their time to pair with an individual seeking to increase range of motion, flexibility, and strength but most importantly to socialize with other individuals and families. Our adaptive swim program is offered during the school year (September thru May) in 8-week sessions at a cost of $200 per session. Our 120,000 square foot, state of the art facility can accommodate families in our men’s, women’s or family changing rooms, fully equipped with showers, lockers, restrooms, towels, and other amenities.

  • 781-522-2054
  • 781-522-2512

CAPEable Adventures
offers adaptive sports & therapeutic recreation activities to local residents and vacationers to the Cape.


Cape Cod Challenger Club
Cape Cod Challenger Club offers noncompetitive sports and recreation opportunities for children with disabilities.

Challenger Sport League
Some towns have challenger teams. The goal of the challenger team is to play with no pressure and to educate typical peers and their parents about sportsmanship. The program is available for boys and girls, ages 3 – 19 with all types of physical and developmental disabilities. Call your local town recreation department to find out if they offer challenger sports.

Children’s Physical Developmental Clinic at Bridgewater State University
BSC students from all majors have opportunities to volunteer as clinicians and work with children and youth with disabilities, ages 18 months to 18 years. Clinic dates are to the right on website’s homepage.

Choral / Community Voices
Open to individuals 16 years of age and older. Must be willing to be committed for 12 weeks. Provides a choral opportunity for adults and young adults with developmental delays. Singing in an ensemble, individuals will have the opportunity to develop and refine vocal technique, listening skills, and team-work. Repertoire will include songs from the masters, traditional and folk favorites, as well as pop and Broadway tunes. Performances are scheduled in December and June. Fee $156/fall, $243/spring.

Compelling Fitness
Compelling Fitness in Hanover provides group and / or individual physical fitness training for children and adults with special needs.

Fitness Program / Special Needs Training
Call your local YMCA.

Horseback Riding – PATH International Centers in Massachusetts
Professional Association of Therapeutic Horsemanship, PATH International was formally known as North American Riding for the Handicapped Association (NARHA). Though PATH Intl. began with a focus on horseback riding as a form of physical and mental therapy, the organization and its dedicated members have since developed a multitude of different equine-related activities for therapeutic purposes, collectively known as equine-assisted activities and therapies (or EAAT).

JF&CS Sunday Respite Program
JF&CS Sunday Respite Program for Children with Developmental Disabilities including those on the Autism Spectrum. Program includes swimming, music and art therapy. The program meets at the Striar JCC in Stoughton from 1:00 -4:00. This program is run by JF&CS with additional funding from Eastern Bank.


Kids In Disability Sports (K.I.D.S)

  • Kids In Disability Sports (K.I.D.S) Thirteen specialized athletic programs are available. K.I.D.S. hosts dances, sports banquets, social activities and recreational events throughout the year. Serves individuals and families throughout Eastern Massachusetts and Southern New Hampshire. Participants range in age 5-40 and have varying disabilities. http://www.kidsinc.us/
  • info@kidsinc.us
  • 1-866-712-7799

LIAM Nation Athletics (formerly known as FOSEK, Friends of Special Education Kidz)
sports leagues for special needs children in Tewksbury and surrounding communities in Merrimack Valley. Accomodates athletes of all abilities. Bombers Baseball, Striker Soccer, Little Reds Basketball.

Mass Dept of Conservation & Recreational Universal Access Program
Mass Dept of Conservation & Recreational Universal Access Program provides outdoor recreation opportunities in Massachusetts State Parks for visitors of all abilities. Accessibility to Massachusetts State Parks is achieved through site improvements, specialized adaptive recreation equipment, and accessible recreation programs.

Massachusetts Hospital School Wheelchair Recreation & Sports Program
Wheelchair sports and recreation program for children ages 9 to 21. Horseback riding, swimming and , Wheelchair Athletes Program.

Miracle League of Massachusetts
Miracle League of Massachusetts provides baseball for special needs children. Free to participate (includes uniform). Located at Blanchard Memorial Elementary School Ball Field in Boxborough.

New England Wheelchair Athletic Association (NEWAA)
Volunteer organization that helps individuals with physcial disabilities participate in recreational
and sports activities. The NEWAA provides opportunities for athletic competition by sponsoring
regional and local meets.

Partners for Youth With Disabilities Provides mentoring programs that assist young people reach their full potential. Partners provides several types of mentoring programs including one-to-one, group mentoring and e-mentoring.

Piers Park Sailing
Piers Park Sailing provides programs for disabled youth and adults aboard 23-foot sonar sailboats on a no charge basis. Serves those with amputations, paralysis, cerebral palsy, muscular dystrophy, autism, hearing impaired, sight impaired and other disabilities. Successfully integrates youth with disabilities into summer youth sailing programs. Scholarships are available for all Adaptive sailing programs. “Yes You Can Sail” program Friday eves for $35.

  • (617) 561-6677

Senseability Gym
Senseability Gym serves special needs children in greater Hopedale area. Our mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.

Spaulding Adaptive Sports
Spaulding Adaptive Sports offers adaptive sports and recreation activities in Boston, Cape Cod and the North Shore. Includes wheelchair tennis, hand cycling, adaptive rowing, waterskiing or windsurfing.

Special Olympics Massachusetts (SOMA)
Special Olympics Massachusetts (SOMA) provides year round sports training and athletic competition for all persons with intellectual disabilities. Minimum age requirement is eight years of age. There is no maximum age requirement. SOMA summer games offers aquatics, athletics, gymnastics, sailing, tennis and volleyball. Go to above link to search SOMA region that covers your town.

Sudbury Adaptive Sports & Recreation
Programs for all ages and abilities.

Super Soccer Stars Shine
Our unique program uses soccer as a vehicle to teach life skills to individuals with developmental disabilities. Our innovative curriculum, designed by licensed educators and therapists, promotes the complete growth and development of each player. Our low player-to-coach ratios encourage and empower players to increase social potential with teammates, build self-awareness and confidence and advance gross and fine motor skills — all while each individual improves at his or her own pace! Located at 1 Thompson Square, Suite 301 in Charlestown. Call for information. Low pricing options and scholarship applications available.

Therapy and the Performing Arts – Cape Cod
Provides children and young adults with physical and intellectual disabilities the opportunity to enjoy various arts and recreational programs in addition to receiving therapeutic benefits from their participation. Children gain new and rewarding experiences from which they develop self-confidence, increase motor function, and have fun. Offers age appropriate programming on Cape Cod for children and young adults diagnosed with down syndrome, chromosomal abnormalies, cerebral palsy, genetic disorders and othe cognitive and physical disabilities. Classes are taught by certified instructors/ therapists with expertise in various disciplines. Programs are offered on a sliding scale fee based on the family’s ability to pay.


TILL Autism Support Center
TILL Autism Support Center has social programs for those with autism spectrum disorders. Programs include exciting Family Fun Days that include apple picking, rock climing, sledding, in-door gym time, zoo trips, holiday parties and much more.

Town Recreation Departments
Most programs are open to participants from neighboring towns. Call area town recreation department to find out if it has special programming for children with disabilities.

Wheelchair Sports & Recreation Assn.
Wheelchair Sports & Recreation Assn. offers information about beach wheelchairs, biking, boating and more!

TopSoccer Program / Outreach Program for Soccer
is a community-based training and team placement program for young athletes with a mental or physical disability. For additional information or would like to start a TOPSoccer Program in your community contact:

YMCAs
YMCAs are accessible and offer a range of classes. Call your local YMCA to find out what programs are available.

The Lowell YMCA “Adaptive Aquatics Program” accommodates children with mild to moderate neurological, physical, or social challenges.

  • (978) 454-7825.

Oak Square YMCA of Greater Boston at 615 Washington St, Brighton has a new adaptive fitness room & offers Adapted Adult Speciality Fitness Partnership Program on Wednesday and Saturday 11AM – 12:30PM on the Fitness Floor.

Hopkinton YMCA offers seasonal specialized programs. “Aim High” archery program and “Rock On!” is an outdoor ropes course and rock climbing for individuals with autism spectrum disorders or related social communication disorders.

  • 45 East Street in Hopkinton.

WaterFire Access Program
A water-taxi program at Dyer Street Dock in Providence Rhode Island which provides an unforgettable experience of the art work for children and adults with disabilities to assure that they can join in the most popular arts event in the state and share the experience with their families and friends. Reservations are required. Each Water Fire Access passenger can bring along one companion.

Waypoint Adventures
Adventures for people of all ages and abilities

Whole Children offers movement, art, recreation and music programs for infants, children and teens of all abilities. Located in Hadley.

Project 22 – Promoted by Team RWB Boston

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Project 22

Tuesday, July 28 7:30PM – 9:12PM
$14.00 General
at Landmark Kendall Square Cinema
Bldg. 1900 One Kendall Square, Cambridge, MA, US, 02139

For more information on this event please visit the Website

Click here to view the trailers!

The making of Project 22
Project 22 was a 22 day, 6,500 mile motorcycle awareness campaign from San Francisco to New York City to raise awareness of the high rate of suicides within the Veteran community. As we traveled across the country, we spoke with many Veterans who had contemplated or attempted suicide and asked them for their stories; what led them to it and what brought them out of it. The responses regarding the challenges were in remarkable unison although the hope they found came in many different forms. We were able to explore the therapeutic potential behind sailing, pottery, education, activism, family, service dogs, painting and more.

We also spoke with leading researchers of Traumatic Brain Injury and Post Traumatic Stress, mental health clinicians and educators, as well as, leading experts in warrior culture and combat stress. Coupled with the insightful and potentially life changing information we captured in interviews, we filmed the motorcycle awareness campaign, including camping, several organized rides and our final ride being escorted into World Trade Center by the Port Authority Police Department. We gathered incredible footage and news coverage in multiple cities, including Pittsburgh and New York.

Project 22 was entirely crowd-funded via an IndieGoGo campaign and private donations. In addition, the crew was offered food, lodging and assistance wherever we rode, helping keep production costs low. Project 22 is fiscally sponsored by From The Heart Productions, a 501(c)3 non-profit organization, while Medicinal Missions applies for independent non-profit status. All donations are tax-deductible and are made payable to From The Heart Productions via the PayPal link on our website or by check to: From The Heart Productions 1455 Mandalay Beach Road Oxnard, CA 93035-2845

From The Heart has been successfully funding films since inception in 1993 under the 501(c)3 Internal Revenue Code of 1954. Also classified as a public charity under section 509 (a) (2) of the Code. Monetary donations to the Fiscal Sponsorship Program qualify as charitable contributions under the U.S. Tax Code for 95 444 5418.

Traumatic Brain Injury

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Traumatic Brain Injury and Closed Head Injury commonly occur due to motor vehicle collisions. Injuries can range from a loss of consciousness of less than five minutes to being comatose for many months. Any level of injury can cause an increase in pre-injury bad driving behaviors or create new, unsafe driving issues. These issues can stem from problems with vision, accuracy and speed of eye movements, speed of response, attention, memory, problem solving, judgment and/or loss of physical skills. It can spare one skill and wipe another skill completely from memory. It commonly makes learning new information difficult and may keep a survivor from quickly learning from their mistakes. All of the above can result in unsafe driving encounters, unpredictable driving actions or repeat collisions for the survivor.

If someone you know has been in an accident or has had a TBI, look for the following warning signs:

  • Inappropriate driving speeds
  • Is slow to identify and avoid potentially hazardous situations
  • Needs help or instruction from passengers
  • Doesn’t observe signs or signals or speed limits
  • Leaves out important road, traffic or warning information
  • Slow or poor decisions to traffic or road changes
  • Easily frustrated or confused
  • Pattern of getting lost, even in familiar areas
  • Collisions or near misses
  • Blames their driving mistakes on the behavior of other drivers

If you or those that drive with you notice any of the above warning signs and need a driving evaluation, give us a call at 508-697-6006 and we can, help you with with knowledge about medical conditions, and help with a comprehensive evaluation and determine your ability to drive.

  • Visual Perception
  • Functional Ability
  • Reaction Time
  • Behind-the-wheel evaluation