ALS Ice Bucket Challenge Progress

 

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 317-915-9888 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

 
care services team button care services program clinic
caregiver support loan closet  


Care Services Team

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

Connie Simpson, MSW, LCSW
Director, Care Services

Indiana Area
Office: 317-612-4277

Fax: 317-915-9889

Connie@alsindiana.org

 

Shauna Smith, BS
Care Services Coordinator
Office Phone: 317-915-9888 EXT. 5
Fax: 317-915-9889
Shauna@alsindiana.org

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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 dietitian, 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

 

Parkview Neuroscience Center

Parkview Regional Medical Center, Entrance 11
11104 Parkview Circle, Suite 040
Fort Wayne, IN 46845
260-425-6780

https://www.parkview.com/services-specialties/neurosciences/specialty-clinics/als-clinic 

 

The care team operates under the medical direction of Guangbin Xia, MD, PhD, who practices with Parkview Physicians Group – Neurology. Dr. Xia specializes in neuromuscular medicine, including motor neuron diseases and other neuromuscular disorders.

Your first visit to the center will include assessments for balance and strength, as well as a review of any medications that you take. Advanced diagnostic testing is available through the ALS Clinic, if needed. Dr. Xia performs electromyography and nerve conduction studies (EMG/NCS) to evaluate the condition of the muscles and the nerve cells that control them.

With a complete evaluation and any diagnostic testing required, the care team will determine the best treatment options for you. Your care team will also answer your questions and help you connect to community resources, as needed. Appointments for new patients are available monthly. 

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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 Numotion.

Examples of items in our Loan Closet include:

  • Power Wheelchairs
  • Hoyer Lifts
  • Rollators
  • Hospital Bed

donate equipment

 

Durable Medical Equipment (DME) Appraisal

The ALS Association Indiana Chapter uses donations of medical equipment and communication devices for those living with ALS that are uninsured or underinsured.  In order for you to receive tax credit for the fair market value of donations thought to be greater than $5,000, you will need to have an appraisal performed by a licensed/certified appraiser and have a copy of the appraisal sent to us.  Interested in identifying the value of your DME before donating it to The ALS Association Indiana Chapter?  You can contact our Appraisal Partner, Douglas R. Krieser, ASA, FRICS with Valcon Partners, LTD to make that determination.  He will provide you with the necessary information you need to submit to us. Download your DME Appraisal form here and send to DougK@valconpartners.com. 

Douglas R. Krieser, ASA, FRICS           

Valcon Partners, LTD, Managing Director 

PHONE: 815-477-1000 

EMAIL: DougK@valconpartners.com                                                                                                                                                                                     Top


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Indiana Support Groups 

Due to the COVID-19 epidemic support groups are meeting virtually.  Contact our Care Services Team for additional information. (Connie@alsindiana.org or Shauna@alsindiana.org)

Lafayette Support Group

1st Thursday of every month                           (June/Aug/Oct/Dec-2nd Thursday)

Location and time varies

For more information contact Cathy Yocum, cyocum53@gmail.com

Evansville Support Group - ON HOLD

 4th Tuesday of every month

Odd months: 1:00 PM

Even months 6:30 PM

For more information contact Dr. Martha Robinson, soundsfirst@gmail.com

Fort Wayne Support Group - ON HOLD

3rd Monday of every month

12:00 - 1:00 PM
Fort Wayne Neurological Building, 3rd floor, boardroom
7956 W Jefferson Blvd, Fort Wayne, IN 46804

For more information contact, Cindy Barron, cbarron@lutheran-hosp.com; (260) 435-6143

 

Terre Haute Support Group

2nd Monday of every month

 12:30 - 2:00 PM

Wabash Senior Activity Center
(Use Poplar St. Entrance)
300 S. 5th St., Terre Haute, IN 47807

For more information contact Candi Snyder, candice.snyder@gentiva.com; (812) 243-7708

 

Indianapolis Support Group - ZOOM

 1st Thursday of every month, unless of a holiday

6:30 PM 

The ALS Association Indiana Chapter

7202 E. 87th St., Ste. 102, Indianapolis, IN 46256 

For more information contact Connie Simpson, MSW, LCSW, 317-915-9888 EXT. 3

 

 

NEW!  South Bend Caregivers Support Group

Last Thursday of each month

5:00 PM - 6:00 PM 

Judd Leighton / Speech and Language Clinic

Madeleva Bldg Suite 150

St. Mary's College, Notre Dame, IN 46556

For more information contact Sandy Papai at 574-213-4637 or albertsan1125@embarqmail.com


 

 What can I expect at a Support Group?

* Educational topics and guest speakers

*A place to share tips and strategies for living with ALS

* A place to learn from other families' experiences

* A place to find support and coping strategies

* Professional support group facilitators to lead discussions, organize topics and provide a confidential safe place

For more information, contact our Care Services Team (317) 915-9888