The Digital Concert Hall of the Berlin Philharmonic
The Digital Concert Hall of the Berlin Philharmonic and Martha Harlam have created a music voucher for listening joy for 9 days- FREE ! This offer is being given to all registered Ataxia people worldwide. For instructions go to website :
The listening Ataxia community is getting this offer until 15.12.2021. A special code for access to over 680+ archive concerts, live concerts and videos on the Digital Concert Hall’s is available. Since people affected by all types of Ataxia are sedentary and have mobility issues – listening to music is a true joy. The COVID-19 pandemic tends to compromise the immune systems of people affected by the neurological disease Ataxia. Making our ability to get up and about is further compromised as well. But we can listen to the radio or our digital devices .
Write to my Contact email: email@example.com to get access for the Ataxia code and registration link.
Martha Harlam has SCA6 and is a mobility limited Ataxian. Being a professional musician she knows how listening to music makes her day enjoyable. The Digital Concert Hall has made a dream come true for everyone suffering from Ataxia. You have 9 days of unlimited access to their Berlin Philharmonic magic and their generosity.
Going Green among other Ataxia options!
Knowing that Ataxia and it’s complications make my life expectancy shorter than most people – I have decided to put things in place. Now that I am 70 years old my future and the legacy I want to leave has many facets to it.
My wishes regarding personal requests, a funeral, the posting of this website and further tree planting have all been addressed. We are all going to go ! But the way you can go and the legacy you leave behind can be determined by everyone. Even people with Ataxia. Here are some options for everyone:
- A) Personally – it is very definitely influenced by the degree of personal suffering involved. Euthanasia might be an option if your region and the legal circumstances allow it.
- B) Green funerals – are becoming an option for people in general. Either a burial or cremation / Urns can be requested to “ go green “ to your funeral provider.
- C) Your legacy can be secured ! You don’t only have to leave a genetic pathway for Ataxia to follow – You can make a legacy donation to Ataxia research.
- D) Contact a reforestation charity ( see our website ) to set up a tree planting legacy!
Make sure your wishes and legacy are written out and legally binding.
We did it!
To produce funds for the documentation of “RARE “. Backers of rare diseases made its $45,000 goal in late October . Now the production team is turning its search beyond just SALLE disease and Ben’s SALLE story ! If you have a story to add about a rare disease- please contact them. Many others will be helped by the making this documentation of rare diseases.
THIS IS HUGE!
In September 2021, organizers of the National Ataxia Foundation( NAF ) and FARA ( Friedrichs Ataxia Research Alliance ) and 100 Ataxia advocates went to the hill – the capitol of the USA and got a congressional resolution to help Ataxia. The senators of Connecticut and Mississippi are pushing for more awareness and funding for Ataxia.
Now we have hope to receive governmental support and not just amongst ourselves as charity fundraising organizations.
Healx – Dr Clara Tang
Thank you for reaching out to Healx. Your website is a great resource.
Healx currently has a drug discvoery and development programme in ataxia focusing on Friedreich’s ataxia – it is in preclinical validation stage. We are working closely with the Friedreich’s Ataxia Research Alliance (FARA) and Ataxia UK to ensure that the patient voice is incorporated throughout our development process.
If there is anything else that I can support you with, please do not hesitate to reach out.
Healx forms partnership with Ataxia UK and FARA
The AI and Bio Drug repourposing company, HEALX , has created a partnership with Ataxia UK and FARA (charities USA/ UK ) to join in the search for treatments and a solution to a cure for Friedrichs Ataxia. FA is considered one of the 7000 rare diseases yet to be fully tested.
The Healx AI company has included Friedrichs Ataxia as one of the rare diseases on their list to tackle and bring solutions to the many people living with Friedrichs Ataxia. Read all about this new partnership at the Healx website.
SCA3 – Melissa Beiner from July 26th
Thank you for reaching out to Biohaven via our social media channel. My name is Melissa Beiner and I am the physician lead for our SCA program. At Biohaven, we do have two fully enrolled, ongoing clinical trials of our drug troriluzole, a glutamate modulating agent, in SCA. We are hoping to have results early in 2022.
Over the past two years, research in this field has advanced significantly. The best way to view all trials is to go to clinicaltrials.gov and search SCA.
Please feel free to reach out any time with questions or for updates on our trials.
Melissa Beiner, M.D.
Director, Research & Development
Working together with NAF
Martha Harlam’s family history of Hereditary Sporadic Ataxia is being considered to participate in an international study-grant that will help generations who live with Ataxia The National Ataxia Foundation in the USA has requested that information about the family so that they may study the possibility of finding a cure for Ataxia. Together with neurological clinics and Ataxia University centers in Spain – the researchers in the USA are using the family information to help find a cure for hereditary-sporadic Ataxia.
OUTRIGHT– LGBTQE / international human rights
The Solution Project CONGRATULATES the organizations founder and Executive President – Jessica Stern for being tapped by the USA / Biden administration as a the Special Envoy on global LGBTQE rights. The elevation of Jessica Stern to this global position is an acknowledgment for her tireless work on behalf of the LGBTQE community.
1 Million women
We salute the 1 million women and the climate change advocates worldwide who helped the organization reach their 1 million milestone! The registered charity in Australia is making a huge difference in the way people put their monies in banks and pension funds on a global scale . The 1 million App is giving people the chance to accomplish this.
Find a cure is a solution member.
Support the virtual fundraising run on July 17-18 Cancer UK is a solution member. Support the virtual fundraising run on July 17-18 Wildlife Fund is a solution member.
Registration link: solution.jmvirtualraces.com
This American charity is dealing with the issues that create human trafficking. Whether it involves commercial reasons like Agriculture or LGBTQE human rights or exploiting children to groom them to enter unwilling relationships to be trafficked.
The Polaris Project is putting a dent in the situation of human Trafficking by tracking it’s influence all over the world.
The Solution Project is working with marine and river plastic clean up. Our collaboration is with the Mississippi River clean up (livinglandsandwater.org) and the Nile River / Egypt clean up (VeryNile.org)
1) Find a Cure – June 15/16 conference on drug repurposing for rare diseases.
See the website for details.
2) Cancer UK “ run for life “ 3k, 5K, 10 K running events in the UK have been canceled due to the Coronavirus. The re-scheduling is being aimed for August 2021. The official date can be viewed on the Cancer UK website.
3) World Wildlife Fund 5K run for nature in June is taking place. For details about this event please connect with the WWF website.
World Health Organization
The Solution Project together with the World Health Organization ( WHO ) is, beyond it’s partner program, supporting charities and organizations that are working to eliminate child marriage and women genitalia mutilation known as “cutting “ . This practice is not only done in Africa. These two lawless practices require global awareness and laws preventing their daily rituals.
WHO – World Health Organization
Since 1971 the Kuwait Society for Disability has been providing disabled children, all over the region services , to the disabled and their families. This Charity is the largest of its kind in the Middel East. After 2 years the vocational center is set to open. The center also has advocacy and legal offices to deal with societal issues.
Visit their website.
As New York City is getting back to normal and more people are getting vaccinated -WQXR radios station is contributing to your mental health with joyous live concerts in NYC on May 15, WQXR will be giving you access to the concert.
New York City residents should contact www.wqxr.org to find out how they can go to a concert live. Listening to WQXR classical music is a joyous way of staying normal during the pandemic.
Restaurant Employee Relief Fund / Guy Feiri
Guy Feiri has established a relief fund in America for workers affected by the pandemic in America. Over 43,000 people in a one- off payout of $500 to help their personal situation has been set up. Together with the National Restaurant Association, Guy has managed to mobilize big names in the Fortune 500 group and others to donate over $ 25 million to the cause. As one of the most recognizable personalities on the Food Network on television , his efforts on behalf of the restaurant industry is being felt by people from all 50 states in America.
NAF expertise :Back by popular demand – talk with Dr. Susan Perlman on May 12 2021 Contact the National Ataxia Foundation to join the discussions.
After the successful Ataxia Conference the National Ataxia Foundation presented in April a new series has been created. On May 12 th Dr Susan Perlman of the Ataxia clinic at UCLA California, will address Ataxia patients questions worldwide. She has been selected to be the guest speaker for May. Is this information regarding another treatment or is it about a CURE for Ataxia?
James Cameron makes a National Geographic documentary called “ the secret of whales “. ( ocean conservation & Animal protection )
James Cameron and Sigourney Weaver have teamed up once again but have brought a light to the beauty of the ocean and our love of Whales.
In a National Geographic/Disney documentary film called “ the secret of whales” the filmmaker and photographer Brian Armstrong has awakened our souls to the beauty of the whale in its playground and living space – the ocean.
Over 100 million doses of the Covid-19 vaccine for the EU by 2023! ( R&D medicine/vaccine research )
Together with the CEOs of Pfizer and BioTech the president of the European Union – Ursula von der Leyen announced that over 100 million doses of the Covid-19 vaccine were purchased for the citizens of the European Union.
In spite of a shaky roll-out , this purchase will make this possible for the citizens of the European Union – one of the most densely populated areas of the world , to be vaccinated against the coronavirus.
In the Netherlands the Dutch para Olympian tennis champion, Monique Kalkman, has inspired the disability mobility company in Holland, Welzorg, to develop a disability golf cart for her.
Now a champion for Golf, her inspiring story and accomplishments can be read at: www.moniquekalkman.com
Golf technology and the EGA Federation of disabled golf brings mobility disabled people to the game ! ( Disability awareness )
The EGA ( European Golf Association ) is helping disabled golfers keep connected to the game of golf. The EGA promote tournaments and disabled golf all over the world. The strap-on capability and the technology of the golf cart of the company Ottobock Para Golf , www.ottobock.com, a signatory to the UN disability act, makes it possible for a disabled golfer to keep loving and playing the game of Golf.
A new study from the medical journal, Golf&Health says , that playing golf helps people in the time of the coronavirus cope both mentally and physically during the pandemic. The risks of catching the virus are lowered considerably due to the outdoor advantages and distancing aspect of playing the game.
Expo Dubai and the Latvia pavilion presents “ SOIL “ and Peatland production.
Latvia is showing the world at the Expo Dubai 2021 just how the sustainability of the material of Peat has shaped and will shape the story behind Latvia. The Ministry of Economics of Latvia and the organization of the Expo Dubai have struck a deal to present a Latvia pavilion .
“Using peat production “ and 4D technology to underscore the Expo Dubai’s message of sustainability – People from the European Union the UK and Scotland can benefit from Latvia’s peat production particularly in the horticultural sector and the climate change sector of CO2 carbon emissions.