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Indiana ALS Care Services & Programs

The ALS Association Indiana Chapter offers comprehensive support for persons diagnosed with ALS, their families and caregivers cope with the day to day challenges of living with ALS by providing information, resources, and referrals to many sources. 

Our Chapter's goal is to offer hope and support in all areas we serve . We're here for you! Contact us at 1-888-508-3232 or info@alsaindiana.org


New Patients with ALS - Register today and a Care Services Coordinator will be in contact to address your needs.  Register Here

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Care Services Team

For requests and questions about our Programs and Services, please contact our Care Services Team:

Connie Simpson, MSW, LCSW
Care Services Coordinator
Indiana Area
317.915.9888 x3
csimpson@alsaindiana.org

 

Donna Casper, MSW, LCSW
Care Services Coordinator
Indiana Area
317.915.9888 x1
dcasper@alsaindiana.org


Care Services - 2018 Patient and Caregiver Survey (Click Survey Link)

The ALS Association Indiana Chapter is committed to addressing the most pressing needs of individuals living with ALS, their caregivers, family, and friends. The Care Services goal is to build an informed, empowered, and well-cared for ALS community. Please take this survey to help guide the Chapter's Strategic Plan to best support your needs. We look forward to serving you and your family members.


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Indiana ALS Research, Philip J. Smaldino, Ph.D.

Philip Smaldino is an Assistant Professor of Biology at Ball State University and maintains an active research lab with his wife Dr. Melissa Smaldino. Phil and Melissa earned their Ph.D.’s at Wake Forest University School of Medicine in North Carolina and both completed postdoctoral trainings at the University of Michigan. The Smaldino Lab primarily studies ‘knot-like’ DNA and RNA structures known as G-quadruplexes and a human enzyme, G4R1, which unties these knots. These studies have led the Smaldino Lab into the ALS field of research where a subset of ALS patients have a mutation in the C9ORF72 gene. This mutation results in an abnormal excess of G-quadruplex DNA and RNA that leads to neuronal toxicities.

The Smaldino Lab is grateful for the funding that the ALSA has provided to study the role of G4R1 in ALS. The goal of this work is to gain a better understanding of the molecular mechanisms involved in this disease and ultimately contribute to the rational design of future ALS therapeutics.

Ball State is primarily an undergraduate institution, and an exceptional team of undergraduate and master students, all of which are Indiana residents, are conducting this work.  

When Phil and Melissa are not thinking about the molecular world, they prefer to spend their time with their three children, Sophia-Noel (3), David (1.5), and newly born Michael (6 weeks), on their small hobby farm tending to their goats and garden, or spending time at their Church. Phil is a native of Buffalo, NY, while Melissa is a Muncie native.


ALS Multidisciplinary Clinics

IU Health Neuroscience Center

The ALS Association multi-disciplinary ALS clinic provides high quality, comprehensive care for people with ALS and their families.  The clinic is proud to carry The ALS Association certification as a Center of Excellence.  The clinic provides access to numerous medical disciplines with expertise in ALS.  Appointments are scheduled on Tuesdays.  Dr. Robert Pascuzzi is the clinic medical director and the professional clinic team includes neurologists, a speech therapist, a respiratory therapist, occupational and physical therapists, a dietician, an orthotist, an equipment specialist, and a social worker. 

The ALS Association Indiana Chapter also partners with the IU Health Neuroscience Center to host art experiential workshops throughout the year, which are intended to promote hope and encouragement to our families and caregivers through the medium of art. This workshop is all inclusive and is made fully accessible to all abilities.  Learn more about our Certified Clinics here

IU Health Neuroscience Center
355 West 16th Street
Third Floor
Indianapolis, IN 46202

A Note from our IU Health Neuroscience Center Clinic

Please remember to bring your medical devices/equipment (bipap, Trilogy, AAC device- Dynavox) to clinic visits. Our clinicians can evaluate usage and make adjustments at clinic. Questions may be directed to Angi 317-963-7385.

 

Richard L. Roudebush VA Medical Center

The Indianapolis VA ALS Multidisciplinary Team offers specialized and experienced staff who are able to meet the unique and complex needs of both the individuals diagnosed with Lou Gehrig’s Disease and their family, and friends. Our goal is to provide individualized and holistic care that improves the quality of life of those impacted by ALS.  Beginning with your initial visit, and throughout your ALS journey, our team will be available to provide compassionate care and support. 

Richard L. Roudebush VA Medical Center
1481 West 10th Street
Third Floor, Specialty Clinic Six
Indianapolis, IN 46202
317-988-9540

VA Clinic 2018

 

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ALS Equipment Loan Closet

Donated and recycled durable medical equipment is available for loan to ALS patients, based on medical and financial need, and is free of charge.  Our Equipment Loan Closet is sponsored and maintained by National Seating and Mobility. 

Examples of items in our Loan Closet include:

  • Power Wheelchairs
  • Hoyer Lifts
  • Rollators
  • Hospital Bed

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Indiana Chapter Grant Program

**MUST BE A RESIDENT OF INDIANA TO QUALIFY FOR THIS GRANT**

The Indiana Chapter Grant Program assists Indiana families with expenses that are not traditionally covered by insurance such as private insurance, Medicare, Medicaid and other assistance programs. It will cover, but is not limited to, nutritional assistance, emergency home care assistance (respite), durable medical expense assistance. For more information please contact your Care Services Coordinator. 

  • Applicants must have an ALS or PSL diagnosis.

 

*Approval of all grants will be based on available funds* 

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Camp HLC 

Nearly 400 Hoosiers living with ALS, 85% of them have children. Hoosiers with ALS require 24-hour assistance with their basic needs and their children often fall into the role of caregiver.  The ALS Association Indiana Chapter has partnered with Hope Loves Company (HLC) and YMCA Flat Rock Camp to bring 45 children together.  HLC Camp is a week-long camp to children and young adults between the ages of 5-17 whose lives have been affected by ALS. The camp is held at the YMCA Camp Flat Rock in St. Paul, Indiana.  Camp is a place where children burdened with the stress of this disease can find self-confidence, empathy from others and love. Days are filled with sports activities, arts and crafts, ALS emotional support and education activities, canoeing, hiking, and so much more!

Camp is free to children and young adults (ages 7-17 years old) who have or had a family member battling ALS.  To register click here

If you have any questions or need assistance please contact: YMCA 1-888-828-9622 or Hope Loves Company: 1-609-730-1144