May Organization Highlight: Bleeding Disorders Association of South Carolina

For the month of May, we are highlighting the Bleeding Disorders Association of South Carolina (BDASC). This non-profit is a chapter of the National Hemophilia Foundation and a member organization of the Hemophilia Federation of America. BDSAC is hosting their 11th annual “STEP for Bleeding Disorders” 5K Walk/Run on May 11, 2024. The goal of this event is to fundraise for the hundreds of families in South Carolina diagnosed with hemophilia, von Willebrand Disease, genetic platelet disorders, and other rare bleeding disorders.

Hemophilias are a group of inherited bleeding disorders where blood cannot clot properly, which can lead to excessive bleeding. Males are more commonly affected by hemophilias, with an estimated 1 in 5,000 males affected with Hemophilia A and 1 in 19,283 males affected with Hemophilia B. von Willebrand Disease (vWD) is one of the most common genetic blood disorders and impacts 1% of the United States, with affected individuals experiencing symptoms on a spectrum of severity. Other inherited bleeding disorders include deficiencies in specific proteins involved in the clotting process such as Factor VII.

The BDSAC raises funds to provide education, support, and financial aid to 500+ families in South Carolina impacted by bleeding disorders. Fundraising also goes towards research into treatments as well as advocating for access to healthcare. Affected adults, children, and their families can reach out to other impacted individuals in the state, giving the opportunity for them to build a support system and be connected to community resources.  The BDASC hosts numerous programs and events throughout the year for children, adults, families, and healthcare professionals. Some examples of programs they host are summer camps for children and teens affected by bleeding disorders, annual conferences, fundraisers, and support groups for specific ethnic and cultural groups. 

This event is located at Saluda Shoals Park in Columbia, SC, with registration beginning at 8:30am and the walk/run starting at 10am. Food and drinks will be provided, as well as entertainment including face painting, a photo booth, and music. If you are interested in participating in the 5k, you can sign up on the website. If you want to volunteer for this event, you can fill out the contact form and a member of the BDASC will get in contact with you.

Contact: sue.martin@bda-sc.org

5k sign ups: https://secure.qgiv.com/event/stepforbleedingdisorders2024/BDASC website: https://bda-sc.org/

Other May Events:

  • Huntington Disease Awareness Month
  • Cystic Fibrosis Awareness Month
  • 2024 The Drive Golf Tournament for Prisma Health Cancer Institute

April Organization Highlight: The Cystic Fibrosis Foundation

This month we are highlighting the Cystic Fibrosis (CF) Foundation! The South Carolina chapter of the CF Foundation is hosting the Great Strides event, which is part of the Foundation’s largest national fundraising event. Each year, approximately 125,000 people participate in nearly 300 walks across the country to support the Foundation’s mission to cure cystic fibrosis and raise awareness.

Since their founding in 1955, the CF Foundation has been able to aid in the funding and development of more than a dozen CF treatments to help those with CF live longer and healthier lives. The mission of the Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care. Their website provides resources to patients and their families about CF management, current research, clinical trials, and more.

The Great Strides event is a 5k walk with food and fun events taking place at Doko Meadows Park in Blythewood, SC. Check-in begins at 9:00 and the 5k walk will begin at 10:00. There are a few ways to participate and help the Foundation’s mission: registering for the walk, recruiting your friends and family to join you, fundraising, and sharing your story. More information can be found on the SC Chapter’s website. If you are not located in the Columbia area, Great Strides events are also taking place in Greenville and Charleston this month!

If you are interested in volunteering for this event, you can fill out the contact form and a member of the Foundation will contact you. Event day opportunities include walk set-up, finish line volunteers, clean up crew, kid’s corner, and more! There are also opportunities to become a year-round volunteer on the website. We hope to see you there!

Contact: southcarolina@cff.org

April is the awareness month for:

  • Autism
  • Minority Health
  • Cancer Control
  • Donate Life
  • Interprofessional Healthcare
  • Parkinson’s

Other events happening this month:

  • SCOA Ring the Bell 5k: SCOA Cares Foundation (4/6 @ Saluda Shoals Park)
  • Super Eliza 5k: Cure Sanfilippo Foundation (4/13 @ Earlewood Park)
  • Get your Rear in Gear: Colon Cancer Coalition (4/20 @ Irmo Community Park)
  • Girls on the Run 5k celebration (4/27 @ 2515 Devine Street, Columbia, SC)

March Organization Highlight: CDR Assistive Technology Lab Expo

This March, we are highlighting the University of South Carolina’s Assistive Technology Lab’s 2024 Annual Expo at the Center for Disability Resources (CDR). It is set to be an educational day filled with exhibits and interactive workshops that will be focused on showcasing assistive technology services for individuals with disabilities. 

Assistive technology refers to an item, piece of equipment, or product system used to increase, maintain, or improve the functional capabilities of people with disabilities. The mission of the South Carolina Assistive Technology Program (SCATP) is to increase access and funding for assistive technology for all South Carolinians. Interested individuals can schedule a free appointment at the SCATP Resource Center to learn about different kinds of assistive technology for work, school, and daily living. 

The SCATP also supports device loans in which individuals can try out an assistive technology device before making a full purchase. Some examples of devices include communication tablets with apps, adapted keyboards and mice, environmental controls, switches, adapted toys, and more. Additionally, assistive technology professionals help provide free or low-cost workshops and training on functional strategies and new devices, which can be held virtually or in-person. SCATP also partners with organizations such as the SC Department on Aging and Walton Options Centers to participate in The Social Isolation Project. This project is specifically aimed at helping individuals with disabilities who are 55 or older who may experience social isolation. SCATP staff visit nursing homes across South Carolina, providing iPad training and assisting residents in selecting apps that enable them to connect with family and friends and engage in various activities.

The 2024 Assistive Technology Expo is set to take place on Tuesday, March 12th from 8:30 am to 3:30 pm at the Columbia Metropolitan Convention Center. Some exhibits listed on the schedule for this day include learning about accessible assistive technology for vision loss, digital accessibility updates for school districts, early implementation of augmentative and alternative communication, and more! Our first-year students will be volunteering at this event by helping with organizational efforts and assisting all attendees, including healthcare professionals and individuals with disabilities and their families. They will be offering hands-on support across the various exhibits and will contribute to the educational and interactive environment of the Expo. 

Details about the event:

  1. Date: Tuesday, March 12th
  2. Time: 8:30 am to 3:30 pm
  3. Location: Columbia Metropolitan Convention Center, 1101 Lincoln Street, Columbia, SC 29201
  4. For more information and to register, please visit: https://sc.edu/study/colleges_schools/medicine/centers_and_institutes_new/center_for_disability_resources/assistive_technology/expo/index.php

March is the awareness month for…

  1. Colorectal Cancer 
  2. Bleeding Disorders
  3. Multiple Sclerosis Education
  4. Trisomy 
  5. Developmental Disabilities 

Other events in March:

  1. 22nd Annual March for Meals 5k on March 9th benefitting Senior Resources and Meals on Wheels Richland County
  2. Midlands Heart Walk at Segra Park on March 23rd, held by the American Heart Association 

February Organization Highlight: Rare Disease Day

Today, February 29th (the rarest day of the year), is Rare Disease Day! This is a day to raise awareness and support those living with rare diseases and their families worldwide. A rare disease is classified by the National Organization for Rare Disorders (NORD) as any disease with less than 200,000 Americans affected. Over 300 million people have a rare disease worldwide, making up 3.5-5.9% of the population. These individuals face unique challenges that come with having a rare disease and often struggle to have wide-spread, accessible health care tailored for their needs. Of the 300 million people affected by rare disease, 72% of the conditions are genetic diseases.

Volunteers and organizations all around the globe join together to raise awareness for and support those with rare disease on this day. Today, the USC Genetic Counseling Program partnered with Child Life specialists (including special guest, service dog Mirabel!) at Prisma Health Children’s Hospital-Midlands to engage with patients and create colorful masks and zebra coloring page drawings with the children. We had so much fun meeting all of them and creating these crafts together!

Our students each chose one rare disease to research and highlight, with facts and community organizations for each listed below:

Sanfilippo Syndrome

Sanfilippo syndrome is a rare genetic condition that causes damage to the cells of the body particularly in the brain and spine which causes fatal brain damage. Sanfilippo is commonly described as “childhood dementia or Alzheimer’s.” There are many organizations that support Sanfilippo including Cure Sanfilippo Foundation.

De Barsy Syndrome

De Barsy Syndrome is a condition that affects connective tissue. It is characterized by loose, wrinkled skin that gives someone the appearance of being older. Other possible features are developmental delay, learning disability, short stature, and visible veins. Cutis Laxa Internationale is a support group that promotes research, raises funds, and connects patients with De Barsy Syndrome and other related diseases. 

Alport Syndrome

Alport Syndrome is a rare genetic condition that affects collagen, specifically in the eyes, ears, and kidneys which leads to kidney disease, hearing loss, and eye abnormalities.  There are many great organizations where patients and families can receive support and resources like the Alport Syndrome Foundation. 

Werner Syndrome 

Werner syndrome is a progressive condition where individuals experience accelerated aging. It is characterized by hair loss, muscle atrophy, skin changes, and early cataracts. Patients are also at risk for diabetes, hormone imbalances, arteriosclerosis, and developing certain benign or malignant tumors. There are many resources for patients and families to receive support, such as the Progeria Research Foundation and the National Institute on Aging.

Stargardt Disease

Stargardt Disease is a slowly progressive condition of the retina’s macula, causing vision loss, and is the most common hereditary form of macular dystrophy in both children and adults. There are several support organizations for those with Stargardt Disease including the Macular Degeneration Organization and Foundation Fighting Blindness.

Pitt Hopkins Syndrome

This rare condition is associated with intellectual disability, developmental delay, speech delay, epilepsy (recurrent seizures), breathing problems, and facial feature differences. It is believed that Peter the Wild Boy who lived in Kensington Palace in 1725 and was the inspiration for Peter Pan had Pitt Hopkins Syndrome.

Danon Disease

Danon Disease is a lysosomal storage disorder. Individuals with Danon Disease have cardiomyopathy, myopathy, and intellectual disability. The Danon Foundation provides information, resources, and support for those diagnosed with Danon Disease. 

Hermansky Pudlak Syndrome

Hermansky Pudlak Syndrome is a rare genetic condition characterized by oculocutaneous albinism, which causes abnormally light coloring of the skin, hair, and eyes. Other features of this syndrome are issues with vision and blood clotting, pulmonary fibrosis, and issues with the large intestine and kidneys. There are multiple resources available for patients and families, such as the Hermansky-Pudlak Syndrome Network.

Perrault Syndrome

Perrault Syndrome is a rare genetic disorder that only impacts around 100 people worldwide. Individuals with Perrault Syndrome may experience sensorineural hearing loss that presents in early childhood or at birth, and females with the syndrome may experience fertility issues characterized by streak gonads and early menopause. Those affected may find support with the National Association of the Deaf or RESOLVE: The National Infertility Association. 

Tuberous Sclerosis Complex

Tuberous Sclerosis is a rare genetic condition that impacts around 50,000 individuals in the United States and is caused by a change in either the TSC1 or TSC2 gene. Individuals with Tuberous Sclerosis develop numerous benign tumors on the heart, brain, lungs, kidneys, and other parts of the body. Neurological symptoms such as seizures, autism spectrum disorder, and intellectual disability may also occur. Symptoms can appear at any point in a person’s life and affected women are at risk for chronic respiratory problems. Tuberous Sclerosis Alliance is an organization that provides resources and support for those affected and their families.

Canavan Disease

Canavan Disease is a rare neurological genetic condition characterized by white matter degeneration. Symptoms include feeding problems, poor muscle tone, seizures, loss of vision, and severe intellectual disability. The prognosis for Canavan Disease is poor, usually resulting in death before age 10. The Canavan Foundation is an organization that supports research for Canavan Disease and also provides support to families and affected individuals.

Aarskog Syndrome

Aarskog Syndrome (or Aarskog-Scott Syndrome) is a genetic condition that affects the development of many parts of the body, including the head and face, hands and feet, and the genitourinary system. It is caused by mutations in the FGD1 gene found on the X chromosome. Because it is X-linked, this syndrome mainly affects males. Some females may present with mild features of the syndrome. The intellectual development of those with Aarskog Syndrome varies widely, from normal intelligence to severe intellectual disability in rare cases. The Aarskog Foundation provides resources and education for individuals affected by Aarskog Syndrome and their families.

Sotos Syndrome

Sotos Syndrome is a rare genetic disorder that is characterized by excessive growth before and after birth, a large and elongated head, distinctive facial configuration, mild intellectual disability, and advanced bone age. Sotos Syndrome Support Association (SSSA) is an organization created by volunteers that are family and friends of those affected by Sotos or similar syndromes. Their mission is to create a social support environment for professionals and families of individuals affected by Sotos. 

Acute Intermittent Porphyria

Acute Intermittent Porphyria, or AIP, is a rare metabolic disorder that causes attacks of abdominal pain, nausea, vomiting, and seizures. Inheriting a variant in the HMBS gene predisposes an individual to display symptoms. To display symptoms, an individual must encounter environmental risk factors such as hormonal changes in puberty, prescribed or recreational drugs, excess alcohol consumption, infection, or diet changes like fasting. The American Porphyria Foundation is an organization that helps families and individuals affected by AIP connect with resources and health care providers. 

Gaucher Disease

Gaucher Disease is a rare, metabolic disorder that is characterized by an array of clinical features that include an enlarged liver and spleen, anemia, thrombocytopenia, easy bleeding and bruising, and fatigue. Patients and their families can find support with the Gaucher Community Alliance, which offers informational webinars, patient stories, and ways to get involved in advocacy.

Ring Chromosome 22

Ring Chromosome 22 is a rare genetic condition resulting when one chromosome 22 forms a ring structure due to the loss (deletion) of genetic material from both the short arm and long arm of one chromosome 22. The size of this deletion varies. Clinical features include developmental delay, poor muscle tone (hypotonia), severe speech delay, and minor physical features such as large ears and a bulbous nose. This type of chromosome abnormality is typically “de novo,” meaning it is brand new in the child and not something inherited from a parent. Individuals with this condition have a risk of developing a condition called Neurofibromatosis Type 2 (NF2), which is a neurological disorder where tumors develop on nerve tissues. A group founded in 1996 called Chromosome 22 Central provides support for all disorders of chromosome 22. They value compassion, connection, and community.

January Organization Highlight: MLK Day of Service

We’re kicking off 2024 by highlighting the annual MLK Day of Service hosted by the University of South Carolina Leadership and Service Center. This year’s MLK Day of Service is part of the monthly “Service Saturdays” program at USC where volunteers can help out at a range of service sites. 

The Leadership and Service Center has built a variety of community partnerships throughout Columbia with the goal of providing opportunities for students to gain real-world knowledge about the challenges many U.S. residents and communities face. These partnerships also provide organizations with a way to improve their efficiency, quality of services, and extent of services. Examples of volunteer work previously done during Service Saturdays include trash pickups and maintaining gardens.

One of the community partnerships that will be highlighted during the MLK Day of Service is the Arc of South Carolina. Established in 1957 and with four different locations across the state, the Arc of South Carolina’s mission is to provide support for children and adults with intellectual and developmental disabilities. They address critical issues that this community faces ranging from quality of life to human and civil rights. Specific services offered by the Arc of South Carolina include assistance navigating and enrolling in the Department of Disabilities and Special Needs services, Autism Law and Emergency Response Training to teach first responders about how to best interact with individuals with Autism Spectrum Disorder, and an Everyday Living program that helps teens and young adults with intellectual or developmental disabilities learn basic living and home skills.

The MLK Day of Service begins at 8:30am on Saturday, January 13th and will wrap up at around 12:30pm. Check-in and site selection will occur at 8:30am at Davis Field on the Longstreet Theater side. Along with the opportunity to volunteer at a campus or community site, this particular Service Saturday will also feature a guest speaker and the chance to compete in a PB&J Making contest for the Arc of South Carolina to address food insecurity in the region. Previous PB&J contests have resulted in over 4,600 sandwiches that were donated to hunger-focused organizations across the Midlands!

Details about the event:

  1. Saturday, January 13th from 8:30am-12:30pm
  2. Check-in at Davis Field in Columbia closest to Longstreet Theater
  3. Transportation to service sites will be provided, as will a pizza lunch when volunteers return to campus at approximately 12:30pm
  4. For more information and to register, please visit: https://sc.edu/about/offices_and_divisions/leadership_and_service_center/service_opportunities/volunteering/service_saturdays/index.php

January is the national awareness month for:

  • National Blood Donor Month
  • National Birth Defects Prevention Month

Student and Community Recap: December 2023

The month of December wrapped up the Fall semester for the first and second years in our program! Starting off the month, some of our first years volunteered together for Harvest Hope Food Bank here in Columbia. They helped organize the food supplies to prepare them for distribution to the community. 

Some of our students also volunteered for a local organization distributing wreaths through an event called “Boxes and Bows.” The organization in charge of this initiative is Prisma Health Foundation-Midlands and the proceeds benefitted the Prisma Children’s Hospital Midlands, allowing them to spread holiday cheer to patients through special greetings and activities.

December was a busy time with our students finishing up their last assignments and finals. Some students went home to take finals and others stayed in Columbia. The students that stayed in the area encouraged each other to push through finals week by studying together! 

Even though finals week was busy, our first and second years still made sure to spend time together before leaving for break. The first years got together for a breakfast before the last day of classes. 

The second years enjoyed a holiday party with a white elephant gift exchange and a final dinner before heading home! Kayla baked delicious Christmas tree brownies for everyone.

After finals, everyone headed home for the holiday season to spend time with family and friends. This time allowed our students to rest and recharge before our Spring semester starts in January. And a special congratulations to Jen, one of our second years, on her engagement!!!

December Organization Highlight: Boxes and Bows and Harvest Hope Food Bank

Boxes & Bows Campaign

Boxes & Bows is a Prisma Health Children’s Hospital campaign here in Columbia, South Carolina. Supporting this campaign helps Prisma Health Children’s Hospital in the Midlands offer special programs and services to patients and families in our community.

Residents of Richland and Lexington Counties who donate $100 or more to this campaign will receive swag, made of magnolia, silver hued cypress and golden cedar, freshly harvested by skilled artisans the day of production and adorned with an elegant, handmade bow. When you participate in Boxes & Bows, a “Holiday Hello” will be sent to a patient at Prisma Health Children’s Hospital in the Midlands. Patients will receive a holiday greeting and fun activity on their hospital room door during the holidays.

This campaign is located at the Prisma Health Midlands Foundation on 1600 Marion Street in Columbia, and can be contacted by phone at: 803-434-7275. The campaign closes on November 27th, and swag will be installed beginning on December 7th by a team of volunteer elves. Additional contacts for this program are co-chairs Debbie Zvejnieks (Debera.zvejnieks@uscmed.sc.edu) and Heather Presnal. If you would like to donate, go to 2023 Boxes & Bows – Campaign (prismahealthmidlandsfoundation.org), contact Joanna.Dyches@PrismaHealth.org, or call 803-434-2407.

Harvest Hope Foodbank

The mission statement for Harvest Hope Food Bank is “… to transform lives in the communities we serve by feeding the hungry, addressing food insecurity and building a healthy and hopeful hunger-free tomorrow.” The Midlands Food Bank is located at 2220 Shop Road in Columbia. They can be contacted by phone at 803-254-4432, or by fax at 803-254-6011.

Volunteers are a huge part of the foodbank and are essential to its function. To volunteer, contact the volunteer recruitment coordinator, Misty Carpenter, by phone at 843-610-1777 or by either email: mcarpenter@harvesthope.org, hhfbvolunteer@harvesthope.org. The volunteer requirements are the following: Must be 11 years of age or older (ages 11-15 must be accompanied by an adult, 16+ may volunteer on their own), must complete a volunteer application, must complete a volunteer orientation, and must complete a safety waiver. Group volunteering is another option, with requirements being: only groups of 5-25 people, ages 11 and up. Groups are required to fill out the group volunteer interest form on their website. All volunteers are required to wear closed-toe shoes. Volunteer positions involve product rescue, emergency food pantry intake, agency distribution, community access and sorting/packing, and administrative.

Harvest Hope is South Carolina’s largest food bank, providing over 20 million meals on average to neighbors in need across the Midlands, Pee Dee & Upstate. Their mission is to eliminate hunger and food insecurity in South Carolina. Harvest Hope has multiple ways they are fighting against both of these issues: rescuing nutritious food from stores throughout the state and distributing it to food pantries, shelters, and soup kitchens. Operating programs that provide food for our most vulnerable citizens- children, seniors, and rural residents who don’t have access to grocery stores. They operate emergency food pantries in Greenville and Columbia where anyone in need can get a week’s supply of groceries for free. Harvest Hope began in 1981 as a result of a shared vision of business leaders and the faith community, whose mission was to provide for the hungry in Columbia. Since then, Harvest Hope has increased its mission to feed the hungry across 20 counties in South Carolina.

Awareness Month/Days in December:

  • National Safe Toys and Gifts Month
  • HIV/AIDS Awareness Month
  • Universal Human Rights Month
  • December 1st: World AIDS Day
  • December 3rd: International Day of Persons with Disability
  • December 4th-8th: National Influenza Vaccination Week
  • December 10th: Human Rights Day
  • December 28th: Trans Youth Day

Other Events in December:

  • Toys for Tots: The Toys for Tots Columbia Chapter provides a list of toy drop-off sites through its website. The last day to drop off toys is December 18th.
  • Easterseals SC Toy Drive: Offers a variety of programs and services tailored to meet the diverse needs of the community. From hearing, speech, and orthopedic impairments, to stroke, neurological disorders and developmental disabilities, Easterseals is committed to empowering individuals with disabilities every step of the way. Easterseals has been serving children with disabilities in South Carolina since 1934. They host an Amazon December Toy Drive: Order from the list and have it delivered to their office directly at Amazon.com.
  • United Way of the Midlands: Santa’s Senior Elves is an initiative in collaboration with Senior Resources. This is a project where an individual can “adopt” a senior who is often overlooked during the holidays and purchase 3 gifts, they’ve “wished” for. December 6th is the deadline to sign up as a gift giver for a senior. December 11th is the deadline to drop off gifts at United Way of the Midlands, or ship gifts to the Volunteer Center, 1818 Blanding Street, Columbia, SC 29201.
  • Strictly Running: December 5th: Mason’s Jingle Jog 5, December 9th: Santa Run 5k, December 30th: Cold Winter’s Day 5k
  • South Carolina State Parks: December 16th: Santa’s at Sesqui 5k

November Organization Highlight: Paws for Elee 5K Race and 1 Mile Fun Run

We are highlighting the 1st annual “Paws for Elee” 5K and Fun Run organized to raise funds for a young girl named Elee who was diagnosed with refractory epilepsy at 9 months old. Elee has a small deletion on her 14th chromosome which is an extremely rare condition that causes lifelong seizures and health complications. For this reason, Elee’s family is raising funds for a service dog! 

There is no cure for Elee’s genetic condition, but her parents want to keep her seizures controlled and as short as possible to give her the best chance at a happy life. This service dog will alert Elee’s family when she is having a seizure so they can react quickly and ensure a better chance at a full recovery. The dog is also trained to protect Elee by laying her down safely during a seizure episode and providing comfort during and after while alerting an adult. When Elee is at school, away from her family, the dog will retrieve her medicines and give them to an adult to administer. 

Seizure alert dogs cost $20,000 and there’s a 2-2.5 year waiting list once they raise the funds. We are excited to announce that they have met their $20k fundraising goal! This is only the beginning of Elee’s journey. Elee’s family has chosen to work with 4 Paws for Ability. They work to enrich the lives of children and veterans with disabilities by training specialized, life-changing service dogs.

Details about the event: 

Saturday, November 4th at 8AM

Registration to walk or run closes on 11/3 at 5PM, cost is $20-35

Located at Saluda Shoals Park (6071 St. Andrews Rd)

Link for registration: 2023 Paws for Elee Register Online (strictlyrunning.com)

Please join us as a registered runner or walker or help us cheer on the others from the sidelines this Saturday!

Other events in November:

  • Leukemia & Lymphoma Society’s Light The Night at SC State House on 11/2
  • 6th Annual Bourbon Hearts Charity Dinner and Auction benefiting the American Heart Association (AHA) and Heart Bright Foundation on 11/10

November is national awareness month for:

  • Alzheimer’s 
  • Stomach Cancer
  • Epilepsy 
  • Genetic Counselor Awareness Day is 11/10
  • World Sanfillippo Awareness Day is 11/16

October Organization Highlight: HDSA

For the month of October, our program is highlighting the 2023 Team Hope Walk in Columbia, SC. The Team Hope Walk is one of the biggest national fundraising events for the Huntington’s Disease Society of America (HDSA), and the South Carolina Affiliate puts one on every year. 

(Fun fact: The South Carolina Affiliate won the HDSA Affiliate of the Year award in 2022!)

Huntington’s Disease (HD) is a genetic disorder that causes the breakdown of an affected individual’s nerve cells. This condition is fatal, and it severely diminishes a person’s mental and physical abilities over time. There is currently no cure for HD, but organizations like HDSA work hard to improve the quality of life for those affected and their families. This is why events like the Team Hope Walk are so important!

The goal of the walk is to raise funds every year for HDSA and spread awareness for Huntington’s Disease by inviting community members and businesses to walk, sponsor, volunteer, or donate. This year the University of South Carolina’s Genetic Counseling Program will be volunteering at the walk to show support and help raise awareness for this important genetic disorder.

This year the walk will take place at the Community Park of Irmo on Sunday, October 8th, 2023 at 2pm. Participants should check-in for the walk starting at 1pm. To sign up for the walk or donate please use the link below to the South Carolina HDSA webpage. To volunteer please email curehdisnc@gmail.com.

We hope to see you there!

Link: https://southcarolina.hdsa.org/events/2023-team-hope-walk-columbia-sc#About%20Team%20Hope

October is the awareness month for…

  • Down syndrome
  • Pregnancy and infant loss
  • Spina bifida
  • Breast cancer

Other events during the month of October:

  • Triumph on the Greens – Adaptive Golf Tournament on October 6
  • Race the Helix at Greenwood on October 7
  • Walk for Life and Famously Hot Pink Half Marathon + 5k at Segra­ Park on October 14
  • Walk to End Alzheimer’s on October 21
  • Suicide Prevention Walk on October 22
  • Family Connection of SC Buddy Walk on October 29

September Organization Highlight: Hydrocephalus Association

This September we are highlighting the WALK to End Hydrocephalus held by the Hydrocephalus Association (HA). This event supports people with hydrocephalus, their families, and medical professionals who work with them. The WALK is the largest annual fundraising event, raising funds for research, advocacy efforts, support, and education. 

There are more than 40 WALKs across the US annually. Together they raise almost $2 million, which is about half of HA’s annual revenue. These events give local hydrocephalus communities an opportunity to come together, make connections, and raise awareness for this life-altering and potentially life-threatening condition. It is a time to pray for those dealing with hydrocephalus difficulties and celebrate those thriving while living with hydrocephalus. New members to the hydrocephalus family are welcomed each year and shown they are loved by the community. 

When you donate to HA, you are supporting their mission to promote a cure for hydrocephalus and improve the lives of those affected by hydrocephalus. HA is the largest non-profit organization solely dedicated to hydrocephalus. Being the largest funder of hydrocephalus research in the US means HA advocates for greater government interest and federal funding for research. Every dollar raised means being one step closer to finding a cure for hydrocephalus. 

Join us for the 11th annual WALK in Columbia on Saturday, September 9, 2023, at Prisma Health Richland Hospital Medical Park 2 (2 Medical Park Rd, Columbia, SC 29203). Registration/check-in begins at 8:30am, opening ceremonies at 9:45am, and the WALK at 10am. The event not only includes the WALK, but also incorporates activities for all ages. HA hosts Superheroes, coordinates a raffle, leads games like bingo and cake WALK, and provides many other fun activities for children. We hope to see you there!

For more information and to register, please visit: 

https://www.hydroassoc.org/event/columbia-walk-to-end-hydrocephalus/ or contact the local event leaders at columbiawalk@hydroassoc.org or call 888-598-3789.

May Organization Highlight: Warming Hearts and FoodShare

The annual USC SOM Columbia Alumni Reunion weekend will be held the weekend of May 19th-21 2023. This is a weekend-long event held in Columbia SC, for all School of Medicine alumni to get together, reconnect, and network in the community where they spent their graduate years. On Sunday, all students and alumni are welcome to join the Warming Hearts Student/Alumni Community Service Project. This event takes place on Sunday, May 21st from 11 am to 1 pm. Tickets are available at https://www.eventbrite.com/e/usc-som-columbia-alumni-reunion-weekend-tickets-571011218927?aff=ebdssbdestsearch to register.

Volunteers will be serving FoodShare, one of our local community organizations. FoodShare believes that access to fresh, affordable food should not be limited to where you live and how much you make. By volunteering in this event you are supporting their mission to ensure fresh, healthy food access for all. This is a great opportunity to meet and connect with both alumni and current School of Medicine students. If you have any questions about this event contact the organizer at https://www.eventbrite.com/e/usc-som-columbia-alumni-reunion-weekend-tickets-571011218927?aff=ebdssbdestsearch.

Other events happening in the month of May

May 20: Project Jasmine Charity Golf Tournament, supporting a non-profit organization against domestic abuse and gun violence

May 21: National American Red Cross Founder's Day

May 27: Sam's Club Fundraiser Drive for South Carolina Veterans starting at 9:30am

May 30: World Multiple Sclerosis Day