ALS/MND Center

This is a multidisciplinary center in Mumbai which provides all the medical and rehabilitative services under one roof. The aim of this center is to provide care and guidance to the patients as well as caregivers and family members, under the supervision of their own neurologist. Our expert panel has doctors from various specialties that are of key requirement in ALS/MND. For the patients who are not currently under the care of any neurologist, we can assign our consultant neurologists who will provide guidance.

All the initial consultations are free of cost for all the patients.

Services offered:

• Medical Consultation: At the clinic we provide medical consultation that includes assessment and guidance regarding current treatment for the patients. Our physician can also help in confirmation of diagnosis. The importance of multidisciplinary management is emphasized and explained Information regarding upcoming treatment options for ALS/MND is also provided.

• Physiotherapy: Physiotherapy consultation focuses on assessing the current physical limitations experienced by the patients. Based on this assessment an exercise program is prescribed to be practiced at home or in the clinic as per the requirement. Concession on charges may be offered for the rehab sessions.

• Occupational therapy: Occupational therapy consultation focuses on multiple aspects like, difficulties in conducting day to day activities, modifications required in the home environment for greater independence and need of assistive devices of different kinds. Therapists may also arrange a home visit for home modifications.

• Speech and swallow therapy: This is one of the most important therapies for patients with speech and swallow difficulties. Exercises to improve speech clarity are taught. Based on the degree of aspiration during swallowing the therapist suggests exercises and/or assistive devices or referral for PEG tube is given.

• Diet and nutrition: With advancing swallowing problems, the nutrition may suffer as the swallowing difficulty leads to lack of interest in eating. Diet and nutrition counseling guides the patients about the consistency of the food to be eaten and how maximum nutrition can be achieved with minimal food volume whenever necessary. A diet chart specifically tailored for your patient is prescribed by our dietician.

• Respiratory support: For patients who have advanced respiratory weakness, consultation from our chest physician is available to guide them regarding the management of breathing problems.

• Gastrointestinal consultation: For patients who are suffering from advanced swallowing problems, PEG tube advice is provided.

• Assistive devices support: Occupational therapists assess the need for assistive devices and prescribe the devices which are most useful for the patients to improve their activities of daily living and the quality of life.

• Psychological counseling: Psychological counseling is an important aspect in the management of ALS/MND. The patients and their family members go through a lot of emotional trauma. They need help to cope with the feelings of anger, frustration, depression and helplessness. Psychologist can guide them or support them by various coping strategies .

• Medical social work services: For patients who have financial limitations our medical social workers can help them.

• Home nursing care: Nursing care is very important in ALS/MND we provide trained nursing care professionals who can guide the caregivers regarding homecare.

RILUTOR PROGRAM

• Asha Ek hope provides rilutor for patients with ALS/MND free of cost all over India.

• This is supported by the generosity of Sunpharma Company who gives rilutor tablets free of cost. The company gives the tablets to the foundation and the foundation sends the tablets to the patients by mail.

• The foundation ensures that all patients of ALS/MND have access to rilutor.

• Our aim through this program is to make rilutor tablet available to all ALS/MND patients. Rilutor tablet is the only FDA approved medicine for ALS/MND. Though marginal rilutor has shower beneficial effects in scientific studies.

CHOTISI ASHA

• Our aim through this program is to spread happiness and smile to patients of ALS/MND.

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  Convey your (ALS Patients) small wishes to us through e-mail and we will try our best to fulfill it.

• Enrolling in this program will ensure that the patients get annual birthday or anniversary greetings cards from our foundation. Birthday or anniversary are special occasion which we all cherish. We feel that by sending a card or a gift on that day will bring a smile on their face. In this way our foundation would like to be a part of their celebration.

• Donors can support the patients through real gifts of various medical and rehabilitative equipments required by needy patients. Asha Ek Hope Foundation will co-ordinate this activity and find donors for the needy patients.

• Donors can support the foundation to fulfill small wishes expressed by the patients.

• Volunteers can donate their time as we feel that time is money. This time spent with patients can give them immense moral and emotional support.

• Volunteers can also give their valuable time to support various activities and programs conducted for the patients. Please enroll yourself as a volunteer for this program.

REHABILITATION SUPPORT

• One of the key components of management of MND/ALS is rehabilitation services like physiotherapy, occupational therapy, speech therapy, diet and psychological counselling.

• Through this program we offer to provide rehab therapist for physiotherapy, occupational therapy, speech therapy and psychological counselling. These therapist can provide therapy by home visit as per the requirement of the patient. For patients with low social economic background foundation can assist with the rehab cost.

• Assessment of patients for the need of any assistive devices is done by an expert. The type of the device and usability is taken into consideration. Guidance and financial support is provided for the assistive devices for eg: writing device, communication device.

• Donors can support this program by generous financial donation.

• Rehabilitation therapist can enroll with the foundation for being a part of home visit rehab program.

RESEARCH

• The foundation supports the research in the field of finding a cure for MND/ALS.

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  Currently Asha Ek Hope Foundation supports Autologous Bone marrow Stem Cell Therapy for ALS/MND. Our representatives in collaboration Neurogen Brain and Spine Institute have presented the research finding at International Symposium for ALS/MND in Orlando, Florida 2015.

• The finding of improved survival in ALS patients treated with Autuologus Bone marrow Stem cell therapy was presented and well appreciated at Asian and Oceanian Congress of Neurology (AOCN) at Malaysia August 2016. Research shows that premenopausal women benefits the most after Stem cell therapy. It also shows that after Stem cell therapy disease progression is slower than the natural history.

• The foundation is in the process of epidemiology statistics making a national registry for ALS/MND with the help of PACTALS (Pan Asian Consortium for Treatment of ALS). This registry will help us in understanding the disease progress and genetic variation of ALS/MND patients in India. The foundation in collaboration with the hospitals and neurologists will maintain the epidemiology records of the patients with MND/ALS. This will help to compute health statistics about the disease.

• In collaboration with IIT Professor we are currently developing a low cost high tech communicative device using eyeball movement sensors for patients with motor neuron disease. This device will aid in better communication and will enable patients to type with eyeball movement which can be connected to a speaker for audio output. Patients will also be able to send text messages and emails using this device.

OUTINGS & SOCIAL EVENTS

• Through this program we can arrange get together of ALS/MND patients and their families.

• We can support patients short outings for eg: to movie theatres, local sight seeing or short picnics .

• Foundation arranges annual get together of ALS/MND patient on every 21^st June on the occasion of ALS/MND day.

• Donors can support in the form of financial assist or vehicles or volunteering etc.